[HN Gopher] Ask HN: HNers with multiple sclerosis, can we get in...
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Ask HN: HNers with multiple sclerosis, can we get in touch?
I was diagnosed with MS 15 years ago, and was doing pretty well for
a long time, but with the pandemic experienced a tremendous amount
of stress that has left me with my first major flare-up since
diagnosis and, more importantly, developing over the past 3 years,
a feeling in my brain that feels like having been lobotomized, and
symptoms like "mild" dementia. Difficulty multitasking, make silly
mistakes, mentally tired easily, emotional issues, etc. The MS was
so far outside my concerns for all these years that I didn't know
about the cognitive effects of MS (though I retrospect I realize I
had some milder form of these symptoms all along), but I now
understand MS causes brain atrophy and damage irrespective of
flare-ups and lesions. I've tried many things to make it better
over this past year especially, but it's getting worse. It's quite
evidently different from depression, it feels like I've lost part
of my brain, which seems to be what's happening with MS. I'm
posting this in hopes I can get in touch with others with MS that
are programmers and are doing well, and have found ways to make
this better, or have gone through periods where they felt like this
and it improved. I can't imagine living like this with worsening, I
don't have any support from family and any savings (lost an
enormous amount of life-changing money few years ago), my
programming abilities have waned, and if I can't support myself in
the future I'm going to end up homeless. I want to believe I can
do something, that there is hope, perhaps medical advances, or
anything I could do. If you want to get in touch my email is
mush_room_hn at protonmail.com. (but you could also reply here)
Author : mush_room
Score : 322 points
Date : 2022-10-22 11:01 UTC (12 hours ago)
| y-c-o-m-b wrote:
| I don't have MS (no brain lesions and no o-bands over a 3 year
| period), but I have an "idiopathic" (unknown) neurological
| disease with very similar symptoms that flare up a few times a
| year. My cognitive decline has been abysmal the last 5 years and
| while I'm nearly 40 years old, I'm still not quite there yet so
| the decline isn't necessarily explainable by aging alone and I
| first noticed it during the onset of my neurological problems.
|
| I used to have a _very sharp_ memory and attention to detail.
| Today I can 't even remember the last conversation I had with my
| wife and I constantly skip words and letters. I also have
| significant word-finding difficulty (mostly in speech).
|
| There are two things I've done to help remedy this which may be
| of use to you: 1) learn something new and challenging on a
| quarterly basis like an instrument or wood-working and 2)
| Adderall. Go get evaluated for ADHD, because it can easily co-
| exist with the MS undetected. It's worth looking into I think.
| mush_room wrote:
| Yeah, I can relate to your symptoms as well...
|
| I really hope you can find a way a diagnosis and a way to
| recover. I don't know much about the criteria, I suppose you
| also don't have sensory/motor symptoms.
|
| I think amphetamines are a bad gamble with neurological
| disease, as the extra strain on the brain is worsening the
| inflammation...
| bitL wrote:
| Try megadosing B1 HCL for a month, you might be just super low
| on it in brain tissues and therefore get mild symptoms that are
| gradually worsening. You might have slow demyelination -
| "Thiamine is a cofactor of the very important enzyme
| Transchetolase of the pentose phosphate shunt that in the brain
| and in particular in myelin is particularly active." Long-term
| lack of B1 seems to be pretty common with processed foods diet.
| B1 is not known to be toxic in any dosage (excess excreted in
| urine) so it's a safe thing to try.
| loceng wrote:
| Look into the company Emcell at emcell.com. They're in Ukraine.
| Controversial, however they claim that fetal stem cell treatments
| (used from donated tissue, if that makes a difference to you) -
| if degeneration of healing systems of the body from MS aren't too
| far along - will stop MS and regress it, reverse damage/heal/cure
| it.
|
| Here's their specific page on MS:
| https://www.emcell.com/treatments/multiple-skleroze/
|
| There are free documentary video(s): https://stemcellsmovie.com/
| or https://www.emcellexperience.com/emcell-videos/ - the 2nd
| video from the top.
|
| Emcell explains that the stem cells they use, from 7-12 weeks,
| are safe to inject in everyone, as the cells haven't started to
| differentiate yet into the unique individual - mainly the immune
| system hasn't started to develop, and that they are the base
| 1000+ stem cell types that we all start with.
|
| I'll email you too in case you miss this.
|
| Edit to add: They also have a bunch of testimonial videos,
| including of doctors of patients they had and couldn't help:
| https://www.youtube.com/channel/UC7FLNCZlZ7ofwOPeclBr-xA - if
| that helps build your trust towards what they offer, if they seem
| genuine or not; it's hard to know with new technologies that
| aren't mainstream, skepticism is healthy - especially when
| desperate people can be an easy target to try to extract money
| from - but then if it is indeed safe as they claim (they've
| supposedly started doing research on fetal stem cells 35-40 years
| ago, and have been offering them clinically for 30-35 years now)
| - then it's a decision that probably lands on the question of
| risk-benefit analysis, ultimately, what do you have to lose?
| mush_room wrote:
| I saw your posts about this searching through the archives; I'm
| not opposed to learning about anything, maybe you have some
| additional info or context, since you've posted about this
| several times? Thank you, appreciate your sharing, I'll take a
| look and see if there's anything to this, at least as an option
| at some point.
| loceng wrote:
| It's likely best to contact them to ask questions for
| whatever you're wondering about. Their previous website was
| far better IMHO, as they listed on their pages the actual
| clinical data/results from their own research - whereas now
| their website is more shallow marketing.
| 5mv2 wrote:
| That sounds incredibly tough.
|
| My brother has a similar/worse sickness that halves his life
| expectancy. He's also a programmer. Some quick thoughts from
| going through the downs with him:
|
| - There's no silver bullet. More sleep, better nutrition, more
| sports, and less stress make a difference.
|
| - My brother literally left a PhD in treatment optimization using
| ML at Cambridge because pharmaceutical companies are churning
| such better treatment so fast that optimization past ones felt
| irrelevant. The bad news is that most new treatments only
| stabilize your situation, so you have to stay as healthy as you
| can until the cure comes. We felt it was better to plan around
| this, and open the door to be positively surprised, than hope for
| the moon and get crushed with never ending disappointment.
|
| - There are many ways of earning a living that don't involve
| programming. Career switches can be daunting when you've lost
| self confidence, but most jobs require only a fraction of the
| brain it takes to program.
|
| - If the prospects are very gloomy, consider changing country. We
| had my brother move country so he could get a medication that's
| not covered at home and costs >$250k/year. The medication changed
| his life, and will soon be covered at home too. Having to leave
| your friends for health reasons suck, but European countries
| offer such better health coverage that it can be worth it. And
| it's easier living a happy life when you don't have to worry
| about unpredictably becoming homeless.
| Mezzie wrote:
| If you move, keep in mind you may need someone to marry you to
| let you in. I have MS and a Canadian master's degree. Wasn't
| eligible to stay in the country because my crippled butt costs
| too much. Most modern countries with universal healthcare have
| very strict rules about disabled immigrants.
| neltnerb wrote:
| I am considering moving to Canada, do you have a link about
| this?
| Mezzie wrote:
| Yup! The Government of Canada discusses medical
| inadmissability [0] on its site. Specifically, those of us
| with MS are prevented due to "Excessive demand on health or
| social services". Cases of this have happened: there's a
| WaPo article from 2017 that includes some examples [1] such
| as a family being denied immigration due to their child's
| intellectual disability and spouses of Canadian citizens
| who are denied permanent residency due to costly
| disability.
|
| Also worth noting that there are very few things that can
| offset MA. One is _potentially_ marriage. But again, I 'm a
| qualified Canadian professional who's half Canadian. (2
| grandparents on opposite sides/both families are from
| border regions so I'm not eligible for citizenship that
| way). Still couldn't stay.
|
| [0] = https://www.canada.ca/en/immigration-refugees-
| citizenship/se...
|
| [1] = https://www.washingtonpost.com/posteverything/wp/2017
| /02/03/...
| neltnerb wrote:
| Thanks, good to I guess at least know where the
| minefields are.
| RL_Quine wrote:
| The laws on what makes you inadmissible medically have
| changed fairly recently, specifically the dollar amounts
| that they consider excessive.
| Mezzie wrote:
| That's good news!
|
| I'm guessing MS is still going to be inadmissable because
| our meds cost ~100k/year (or more depending on the med).
| We're expensive.
| bennyelv wrote:
| I'm a programmer with MS. Like you, diagnosed about 15 years ago,
| but still doing pretty well. I feel like I'm starting to notice
| the gradual decline more and more, despite not having had a
| serious clinical relapse for about 10 years (some minor ones).
|
| Things you can try: Changing your drugs - maybe going for
| something drastic like HSCT.
|
| Being patient and not panicking - if you're currently having
| flare ups your symptoms will appear worse than they really are
| while there's acute inflammation happening. Don't forget that. If
| the flare ups get under control you'll should see some recovery
| and improvement.
|
| Not giving up - keep pushing yourself as hard as you can, make
| sure you're training whatever's left of your central nervous
| capacity. There's probably still some left. Keep trying to do as
| much as you can and you'll get access to it.
| mush_room wrote:
| Thank you. May I ask what are you planning for yourself in the
| future? I've heard that HSCT is not recommended after 40. Are
| you on any drugs and have they helped?
| bennyelv wrote:
| I'm doing ok on ocrelizumab ( 3rd year just done) and had a
| good innings with natalizumab before that. In the UK I'm not
| eligible for HSCT unless I relapse on ocrelizumab. That may
| change of course.
|
| I'm not sure whether HSCT is right for me given that it has
| some pretty big downsides. My latent symptoms are well
| controlled at the moment and don't affect my quality of life
| too much. If I had to manage a thyroid disorder as a result
| of HSCT I'm not sure that would be an improvement for me.
| mush_room wrote:
| I thought HSCT could halt the disease entirely, but I'm not
| sure... It's the silent progression of the disease that
| worries me.
| bartpeeters wrote:
| I too am a developer with MS. Got my first real flareup when I
| was 25 years old, I'm 28 now. I'm on ocrelizumab (Ocrevus), which
| should help prevent new flareups.
|
| The whole work from home movement, really helped me, I now work
| 4/5 days from home and it allows me to easily take a break and
| make sure I don't get too much stress. Also no stressful commute.
|
| So really the only advice I can give is to try to avoid stress.
| Which is easier said than done, but things that gave me a lot of
| stress before MS, hardly generate any now, because when put into
| context with the first flareup and losing the ability to move the
| fingers of my left hand, most things seem only minor.
| [deleted]
| daoist_shaman wrote:
| Hey buddy. I suffer from a remitting/relapsing autoimmune disease
| called UC that has me urgently sprinting to the toilet 15 to 20
| times a day. Sometimes it feels like I'm chained to it, and can
| only wander so far until the shits strike again. It's chronic and
| wears down on my mental health in similar ways. It's progressive,
| so one day my colon may need to get replaced with a bag that
| dangles outside my body so that my natural butthole will be able
| to go on retirement forever.
|
| The one major observation that I've made from all this is the
| role that stress plays. Reducing stress seems to have a powerful
| inhibitory effect. Practicing positive self talk (and catching
| yourself when you say anything negative to yourself) and moving
| the body with yoga also seems to help. Getting adequate sleep and
| nutrition is critical. I'm also convinced that being open minded
| to both Western medicine and Eastern cultural traditions (diet,
| yoga, Taoism, etc) has played a role in slowing my disease
| progression.
| mush_room wrote:
| Thank you very much. That seems rough. For whatever it's worth,
| I need to share this, as I had stumbled upon this person who
| recovered from UC with a meat-only diet:
| https://www.youtube.com/watch?v=JX7LzKEMTpU.
|
| I'm getting more into the eastern tradition, I think the mind
| can heal and can cause disease in an of itself. I need to delve
| deeper into it.
| fredgrott wrote:
| Hmm, the neurotropic stacks that many of us use in milder form
| for ADHD etc. that some of HNers use may help.
|
| Specifically you want a very mild MOAI to keep dopamine around
| longer and that is in fact ginkgo. You want a smaller dose of
| L-DOPA which is dopamine that crosses the blood brain barrier
| with dose around 20 mg L-DOPA. Another method if you cannot find
| the small L-DOPA dose is to take caffeine in a micro dose with
| macro dose of the weaker Theobromine as then it lasts 12 hours.
| To do that look for bakers cacao chocolate and take 2 small
| squares with breakfast.
|
| The other thing you will need is a product that has NFS and BDNFS
| in it such as the commercial product Neuriva.
|
| Also talk to older programmers as many of us are doing something
| similar to deal with aging via cognitive changes.
| lakeeffect wrote:
| I have MS and definitely didn't know that the secondary
| progressive form of the disease was just a matter of time. Now
| I'm slowly losing the right side of my body after years of being
| in remission with numbness in my hands being the only symptom.
| There are definitely medical advances. The one I'm most excited
| about is nervgen. It's regenerative without the radiation and
| terribleness of stem cells. But it's only starting phase two
| trials. Hang in there, it sucks but the doctors reassure me that
| it's a good time to have MS as thirty years ago there were no
| treatments. Now there is the walking pill to help nerves conduct
| and it really works for me. There are also dmts that slow the
| progression or stop future lesions.
| mush_room wrote:
| Thank you.
|
| I will look into nervgen, initial search results say something
| about spinal cord neurons, is there anything for the brain?
|
| Lastly, I'm not on a DMD, which one are you on, or would you
| recommend? I didn't understand they slow the brain atrophy part
| of the disease progress, do all or just some of them do?
| citboin wrote:
| What do you mean by "the walking pill"?
| batch12 wrote:
| Google says "(dalfampridine) Extended Release Tablets, 10 mg,
| is the first and only brand prescription medicine indicated
| to help improve walking in adults with multiple sclerosis
| (MS). This was demonstrated by an increase in walking speed."
| musictubes wrote:
| Can confirm. It helps me out. It is a potassium channel
| blocker that somehow improves nerve conduction in the lower
| body. It has been available at compounding pharmacies for a
| very loving time. A company took that, made it a time
| release pill, went through the FDA hoops, and then released
| it as Ampyra. Like all MS drugs it was super expensive. Now
| the generic is available. Still expensive, the number I see
| is something like $1100 a month. My pharmacy told me they
| bill the insurance company $180 lol.
|
| If you don't have insurance or it doesn't want to cover it,
| you can get a prescription and a compounding pharmacy can
| make it for you. If they don't do time release you'll have
| to dose every 3 hours or so. It's a lot less expensive
| though. Last time I checked it was less than $100 a month.
| Eric_WVGG wrote:
| What do you mean by "terribleness of stem cells"?
| vrc wrote:
| Stem cell therapy (autologous) involves wiping out your
| entire immune system and then rebuilding it from scratch
| using your own stem cells. It uses (usually) strong chemo
| drugs to do the wiping out, which themselves are toxic and
| have tons of side effects. You are rendered weak, with a high
| risk of secondary infection that requires you to basically
| isolate yourself until your immune system recovers. It's very
| unpleasant. Close family member is currently in the midst of
| it for multiple myeloma, and spent an extra week in the
| hospital from secondary infection.
| Eric_WVGG wrote:
| Wow, I had no idea. Interesting, thanks.
| sjezewski wrote:
| Sorry to hear you hurting. I've been there.
|
| I was dx when I was 27, I'm 35 now. Though looking back I think I
| had it at least since puberty.
|
| Right before the pandemic I was in a similar spot w my health.
| It's rough. I would say I was roughly at EDSS 3-4, and I could
| feel myself slipping further. I won't list my symptoms. Physical
| limitations were starting. Mental limitations where huge. And so
| much pain.
|
| The pandemic was hard but brought me amazing gifts.
|
| I've been off any medication (ocrevus) 3 years now. I feel 20
| years younger. I'm on fire mentally physically emotionally
| spiritually sexually. I feel like the luckiest person alive. But
| I also think what worked for me will work for others.
|
| It's not all puppies and rainbows.
|
| It takes work. It's not for the feint of heart. It's no
| guarantee.
|
| I'm happy to share w folks. But I will not discuss it further on
| HN.
|
| Feel free to reach out:
|
| seanjezewski at protonmail dot com
| mush_room wrote:
| I'm sending you an email, but just want to mention I had a
| period in 2019 where I felt exactly as you describe. But then,
| things happened.
| svillar wrote:
| What I have seen work and suggest you try;
|
| -plant based diet (if it had a mother or a face, you avoid it)
| -no oils -high dose vitamin b1 (500mg capsules, 2 pill twice a
| day). It is water soluble so what you don't use won't harm you,
| just drink enough water -omega3 (check labdoor for
| recommendations)
|
| Start with the above, after 4 weeks you could also explore;
|
| -infrared sauna (fantastic detox and for inflammation) -red light
| therapy (can find devices on amazon) -a functional doctor who can
| conduct a comprehensive evaluation and see if you could benefit
| from detoxing from heavy metals for example.
|
| Good luck, I think diet and lifestyle changes including stress
| reduction will have the biggest impact.
| axpy906 wrote:
| I don't have MS but suffer from autoimmune disease due to low
| platelets. People have mentioned stress management and I want to
| echo that with pointing out tools to help. Starting a daily
| mindfulness practice, even if for 5 minutes, will help greatly.
| Journaling - wether it's a gratitude one or simply writing your
| feelings down - helps too.
| dnndev wrote:
| This is going to be out there in left field and our experience so
| far.
|
| 1- (will not help you but for the benefit of others) My wife has
| MS and the doc said if she gets pregnant it may help. She got
| pregnant and yep sure enough life changing results for the
| better.
|
| 2- Covid vaccine helped her. She felt better after getting both
| phizer shots. Like her body needed it.
|
| 3- She has Been using a machine called truerife for Lyme and says
| it also helps. She takes a lot of fish oil every day, not the
| cheap stuff you find at the box store. Lookup nutridyn omega
| pure.
|
| 4- Along with medical professionals find a naturopath. We see one
| that is semi retired that changed my mind from snake oil to he
| knows what he's taking about and saved me from pretty major
| surgeries twice now.
| alexmanuel27 wrote:
| rancar2 wrote:
| I'm lucky to have lovely, smart person in my life who lives with
| MS. Thank you for sharing you story. You are by no means alone in
| this and your concerns are shared by many others who live with
| MS. I will send you an email shortly, but for others with similar
| stories that read this in the future, I high recommend the local
| groups from the MS Society
| (https://www.nationalmssociety.org/Resources-Support/Find-
| Sup...), reaching out to a team member at the Elliot Lewis Center
| (https://elliotlewisms.com/multiple-sclerosis-care-team/) even if
| you aren't a patient along with following their materials on
| social media which provide Q&A on the latest case information and
| especially critical during the pandemic when information on MS-
| specific was limited/unknown, ensuring you are on a best-in-class
| treatment that meets your needs (which for many people in the US
| will be Ocrevus, https://www.ocrevus.com/), given the level of
| impairment you may qualify for state and federal programs in the
| US so call the SSA at 1-800-772-1213
| (https://www.nationalmssociety.org/Living-Well-With-MS/Work-a...)
| to ensure you know what you need to do to ensure you are always
| supported financially in your journey, and if you are still
| physically active, I'd also suggest the free trips for MS
| patients with First Descents
| (https://firstdescents.org/programs/programs-application/).
|
| There are a lot of resources in the US, but it's hard to do it
| all alone. Unless you know someone who has been through it, it's
| hard to navigate so try to get an MS Navigator assigned from the
| MS Society as well, which is completely free. You can call M-F
| 9am-7pm ET at 1-800-344-4867.
|
| I hope this helps others living with MS.
| mush_room wrote:
| I'm not in the US but I hope your post helps someone,
| appreciate it.
|
| Would you mind sharing your wife's experience with Ocrevus? I
| hear it's available where I live as well, but reflexively
| searching for side-effects some people don't do well at all
| with it. But I would like to hear how it benefited her if you
| will. Thank you.
| graemebenzie wrote:
| The latest research suggests that MS is an autoimmune response to
| the epstein barr virus. Almost everyone carries it but few will
| develop MS. Like long covid but long epstrin barr. So a very
| interesting time for research
| https://www.science.org/content/article/two-decades-soldiers...
| emmelaich wrote:
| I don't have MS but I know someone who was recently diagnosed.
|
| They have responded very well to monthly infusions of Natalizumab
| (Tysabri)
|
| We are lucky to have some of the best doctors in the world for
| this: https://www.nslhd.health.nsw.gov.au/Services/Pages/ms-
| rnsh.a...
| dmclamb wrote:
| I'm 50. Diagnosed with MS at 40. Symptoms began around 19. Still
| working full time but live never knowing for how much longer.
|
| MS sucks.
|
| Things I have found helpful for me, ymmv: cando-ms Ocrevus Ampyra
| Eliminate processed foods, eat lots of fruits/veggies Exercise
| the parts of the body that can still move John Kabat -Zinn,
| mindfulness meditation for pain management Sleep Get outdoors a
| few minutes every day Participate in clinical trials Meet with
| others fighting MS who still hold on to hope, and can still laugh
| and cry
|
| Things I believe that may not be true EBV virus/mononucleosis
| plays a significant role in my MS Still unknown, but there is
| interesting science on this. I tried to qualify for a study on
| ATA188, which kills EBV infected immune cells, but did not
| qualify.
|
| I wish you well.
| [deleted]
| k__ wrote:
| _" one million people with MS in the United States in 2022, and
| in 2020, about 2.8 million people were affected globally"_
|
| Is there a reason why the US is affected more?
| rtlfe wrote:
| If the link in this comment is accurate, part of it could be
| that Americans eat terrible food.
| https://news.ycombinator.com/item?id=33297849
| mush_room wrote:
| I'm not American, but I doubt I would have gotten MS were it
| not for terrible diet, stress, lack of sleep, various
| deficiencies at the time of diagnosis but also during
| childhood. Also had a very bad bout of mononucleosis when I
| was 10 (while also being malnourished), so these things can
| go quite far. So I think my nervous and immune systems were
| always frail.
| pama wrote:
| So sorry to hear. As of 2022 there is enough evidence for a
| causal link between EBV (the virus that also is behind
| mononucleosis) and MS later in life. The hope is that
| humanity will eventually have strong drugs and maybe a
| vaccine. Unfortunately, progress has been very slow until
| now. I hope things will move faster now that people could
| convincingly argue about this link between a virus and the
| disease.
| lebuffon wrote:
| And right next door, Canada is #1.
|
| <rant> When you look at the geographic distribution of MS you
| would think there might be a pathogen involved. Clearly there
| are other factors (genetic, environment?) since not everybody
| gets it, but there is evidence on the map.
|
| Modern DNA techniques should make it possible to search for a
| culprit but if you don't "believe" that a pathogen is a
| possibility you will never search for it.</rant>
| pama wrote:
| Yes there is probably a particular virus that's involved. It
| is EBV, unfortunately a very common virus that can get
| reactivated by COVID-19. The picture only got clear this year
| and there are no great therapies or vaccines yet. In this
| study from earlier this year, the chance of active military
| developing MS was 32-times (3,200%) higher for people who had
| EBV vs those that had other common viruses:
| https://www.science.org/doi/10.1126/science.abj8222
| f6v wrote:
| It doesn't have to be affected more, just diagnostics in US
| might be better. People in outer parts of the world might not
| be getting diagnosed and cared for.
| arghwhat wrote:
| On the other hand, many other places have much more
| accessible health care with similar or better quality.
|
| Definitely some selection bias in there, but not "the US vs
| the world".
| ianbicking wrote:
| My impression is that there's a lot of discretion in an MS
| diagnosis, that it's a set of symptoms with no other
| identified cause. I.e., it's like a process of elimination.
|
| I don't know much about MS so I can't make any claim
| really, but it seems like there might be room for those
| symptoms to be interpreted very differently in other
| countries with different training and testing protocols.
| kzrdude wrote:
| Lots affected in scandinavia. The doctors claim scandinavian
| genetics predict higher incidence. But it could be a
| confounding factor.
| emmelaich wrote:
| MS is more common in rich countries. My speculation is that
| rich people spend more time indoors, away from the sun.
| jll29 wrote:
| This is likely measurement bias - a statistical distortion
| caused by more easily available or better-working diagnostics.
|
| (for the same reasons, some countries want to reduce CoViD
| testing so it appears there are fewer cases, exploiting this
| distortion.)
| bufordtwain wrote:
| MS is a weird disease, it can stabilize for long periods of time
| and it can suddenly get worse (an "attack"), and then improve,
| but sometimes not completely. If I were you, given your current
| problems, I'd check into what your options are as far as
| disability payments. If you are currently employed does your
| employer offer long term disability or short term disability? If
| you are US-based you could apply for social security disability
| or SSI (if you haven't made enough SS contributions), potentially
| food stamps and free/reduced cost healthcare depending on your
| state. All the best.
| breck wrote:
| Have you read Breath by James Nestor (or the audiobook)? Not sure
| if that would help, but it couldn't hurt.
| parksandrec wrote:
| Throwaway. I'm 60+ old living with a Parkinson's diagnosis since
| my mid-50's. Programming (and related management roles) is my
| sole source of income. Due to some bad decisions and worse luck,
| I have zero retirement savings (other than SS) and two
| dependents. I was consulting but my last client dropped several
| months ago. I'm frantically posting applications but so far have
| no offers.
|
| For those who don't know, PD often has associated cognitive
| effects. I now search for the right word, and lose my train of
| thought frequently. Nonetheless I think my programming skills are
| so far not obviously affected, though I go through periods where
| it is more difficult than it used to be to concentrate and keep
| everything in my head necessary to finish a task in a reasonable
| time period.
|
| I'm lucky in that I do not have a noticeable resting tremor that
| would be a dead giveaway. Also remote interviews don't involve
| people noticing my awkward posture or difficulty getting out of a
| chair. I believe so far I "pass" as far as seeming obviously
| disabled, although my age is apparent both visually and if you
| examine my resume carefully.
|
| I would love to join a support group of people struggling with
| these sorts of problems. As we all know on this forum, the tech
| world fetishizes youth and 'potential', and tends to undervalue
| experience and hard-won deep knowledge.
|
| I suggest you open the idea to basically anyone in high tech who
| is experiencing significant challenges due to disease or even
| just advancing age. Maybe a discourse channel? Or some other
| format. I'm sure some of us would be willing to allocate a few
| hours a week to set up and manage a forum. It would be great to
| share stories, tips & tricks, health advice and so on, knowing
| that it would be shared with others who are facing similar
| struggles.
| treeman79 wrote:
| I have MS symptoms. Was eventually diagnosed with Sjogrens.
|
| Autoimmune protocol diet was a big help to stop flares. LDN helps
| a ton to get nerve pain under control.
|
| Blood thinners brought back my cognitive function as I was having
| tons of mini strokes .
|
| Vit d,b12,e, fish oil. Magnisium have all improved quality of
| life
| leftismer wrote:
| Hey tried to send you an email but the recipient's address was
| rejected because the address does not exist.
| detaro wrote:
| https://news.ycombinator.com/item?id=33298609
| benzesandbetter wrote:
| Sorry to hear that you going through that. Not and MS patient
| personally, but I've been going to a special clinic in Mexico for
| more than 10 years and MS is one of the conditions they treat.
| I've met quite a few MS patients there who achieved life-changing
| results after doctors in the states and EU had failed to help
| them.
|
| This clinic helped me overcome a toxic mold exposure that was
| producing autoimmune and neurological issues that various doctors
| in the states were unable to effectively diagnose or treat. (They
| were happy to take my money though) A few year later, I was hit
| by a drunk driver in Nicaragua and doctors in the states told me
| I was going to need multiple surgeries and need to adjust my
| expectations for what healing looked like. With help from this
| clinic, I was able to recover from that with no surgeries and
| have no residual issues whatsoever.
|
| The important thing here is that you keep a mindset that healing
| is possible, and keep exploring options until you find what
| works. Don't get bogged down envisioning worst-case scenarios. Be
| vigilant of your thoughts and any time you find yourself going
| into those fear-based scenarios, do a pattern interrupt and
| replace them with positive thoughts. For me, the visions I used
| to replace those fears was seeing myself hiking in the mountains
| with my dog, feeling healthy and strong. A few years into my
| healing journey, I found myself doing exactly that. Hiking above
| the treeline on Mt Shasta with my Malinois, feeling strong in my
| body, with clean mountain air in my lungs. I sat down and wept
| tears of gratitude.
|
| Keep pressing forward. It gets better.
|
| Sending you an email.
| axpy906 wrote:
| Would love to hear more about the clinic. I've heard they can
| do more treatments than outside the US. All of interest to me
| since I've got a myeloid condition.
| replwoacause wrote:
| What's the name of the clinic?
| AuthorizedCust wrote:
| "toxic mold exposure"
|
| Red flag!
|
| This is among the constellation of fake, unlikely, or
| exaggerated conditions concocted by the alternative medicine
| industry so that they can sell more sham treatments.
| edmcnulty101 wrote:
| Sometimes it's as simple as your chakras being out of
| alignment.
|
| Sometimes it's more complicated though.
| sooyoo wrote:
| I'm sorry to sound negative, but what you are saying about this
| "clinic in Mexico" sounds too good to be true. And everybody
| knows that when something sounds too good to be true ...
|
| More concretely, are you suggesting that US and European
| doctors are ignoring science about MS and just take the money?
| And the Mexican doctors at this clinic somehow magically have a
| cure which the rest of the world, at least the western world,
| ignores to ... enrich themselves?
|
| Seriosly, this sounds very dubious. I'd caution the poster to
| get into fishy recommendations and blindly trust a stranger on
| the internet based on hope. Especially out of desperation.
|
| And I find it deeply unethical to get the hopes up for somebody
| so desperate for a solution as the poster is. Their condition
| and outlook are bad enough, they don't need to be tricked on
| top of that. One of the huge red flags is the hush-hush "I'll
| send you a mail" Why this secrecy?
|
| I urge you to either put evidence if your claims on the table
| or stop posting this kind of thing.
| alfor wrote:
| While I agree with you with my alarm bells, I found out too
| that our medical system is way more a money extraction
| machine than an health machine.
|
| We are chronically deficient in infrared light, it's killing
| people, it's well researched yet there no pill for that: no
| money, no reach.
|
| https://youtu.be/5YV_iKnzDRg
| refurb wrote:
| _While I agree with you with my alarm bells, I found out
| too that our medical system is way more a money extraction
| machine than an health machine._
|
| But that's exactly what a lot of clinics doing stem cell
| therapy are doing themselves.
|
| No evidence the therapy works but happy to accept you as a
| patient as long as you can fork over $100k.
| alfor wrote:
| True, if there is that amount of money involved they
| should have solid proof.
| diceduckmonk wrote:
| > I'm sorry to sound negative, but what you are saying about
| this "clinic in Mexico" sounds too good to be true. And
| everybody knows that when something sounds too good to be
| true ... More concretely, are you suggesting that US and
| European doctors are ignoring science about MS and just take
| the money? And the Mexican doctors at this clinic somehow
| magically have a cure which the rest of the world, at least
| the western world, ignores to ... enrich themselves?
|
| I'm assuming you aren't aware of the Dallas Buyers Club.
| Kye wrote:
| In that case society and government were widely opposed to
| helping and considered the plague a positive and much-
| deserved thing. There isn't the same level of stigma around
| MS.
| AutumnCurtain wrote:
| Dallas Buyers' Club was a thing because of
| governmental/societal prejudice against HIV/AIDS victims
| which itself stemmed from Christian bigotry towards gay
| people
| Nomentatus wrote:
| If you know anything about the history of science generally,
| you know that most genuinely new research results are ignored
| for decades before being embraced. Simple ego suffices, greed
| isn't the usual reason for this. I agree that more openness
| would be good, but as seen here the amount of flak that can
| result is daunting. MS research over the last century is a
| particularly gasp-inducing litany of tunnel vision and
| refusal to try (or acknowledge) more than one narrow research
| approach at a time.
| sooyoo wrote:
| Being in empirical research myself, I'm well aware of the
| obstacles that new insights in science sometimes have to
| face.
|
| It's rare though that the breakthrough comes via an obscure
| secret clinic in Mexico though which is only spread via
| "I'll email you".
| Nomentatus wrote:
| But it is not at all rare that such fly-by-night clinics
| grab someone's obscure result at third hand, rather
| randomly. They're a crap source of information, but not a
| disconfirmation.
|
| Where there's an ick factor, or a safety factor, as with
| infecting oneself with worms to reduce allergies, the
| effect is perfectly real. The Mexican clinics are either
| are either ahead of their time or unsafe; ya just don't
| know which.
| sooyoo wrote:
| Yes, and it's closer to a 1:99 ratio than 50:50, making
| it pretty irresponsible to promote any if them here.
| Nomentatus wrote:
| I have a medical condition (highly comorbid with MS) for
| which I've tried, probably 1,000 or more approaches over
| decades. About ten of them worked (better together.)
| Three or four were key. Would recommend.
|
| Some of the things that worked best would have sounded
| too ridiculous for any Mexican clinic to try to sell to
| anybody. In my position, I think you would have been glad
| for any new (and safe-ish) ideas to try out, too. I just
| wasn't interested in paying the fly-by-night clinics, I
| don't advise that. Openness (not of the wallet but the
| mind) worked very well for me. Just really, really
| slowly.
|
| So I'm more of the "don't sit still" and "bring out the
| ideas," sort. 1/99 odds sounds damn good next to what I
| went through. So I don't mind people posting ideas here,
| it's an adult forum. Ish.
| alfor wrote:
| Did you try infrared light therapy? Did wonder for me,
| cost almost nothing, cured my eczema (quick visible
| result!)
| mush_room wrote:
| I understand it might not be relevant for MS, but could
| you share what worked?
| ryanackley wrote:
| Agree with you about the magical mexican clinic sounding a
| little too good to be true.
|
| However, I can totally see doctors in the US and Europe
| ignoring or not knowing about the latest treatments for
| conditions. As I've aged and watched my parents age, We've
| dealt with several conditions where doctors have no idea and
| at some point they just think you're making it up. It feels
| like most doctors are just barely showing up to work
| mentally. If you don't fall within the dozen or so
| conditions/treatments they are familiar with they throw their
| hands up.
| hirvi74 wrote:
| > If you don't fall within the dozen or so
| conditions/treatments they are familiar with they throw
| their hands up.
|
| Absolutely true in my experience. They just throw various
| treatments at the wall and hope one sticks (though I find
| this more true for psychiatry than perhaps other fields of
| medicine).
|
| I seriously think more people would benefit from a more
| holistic approach to medicine. I do not mean holistic in
| like woo-woo essential oils, but rather trying to treat all
| aliments as piece of a greater puzzle than each disease
| needing a different doctor per disease which never
| communicates with one another.
| mush_room wrote:
| Hey, I appreciate both of you; I wouldn't characterize the
| parent as unethical, he seems like a real person with a
| story, on the surface I have doubts it could work for me, but
| I won't rule it out, if only I had the financial means to
| try. You're not entirely wrong about your assessment, when I
| first got diagnosed I was quick to believe anything that
| would promise help, and even followed through with some
| (pricy and ineffective) treatments like CCSVI procedures
| (which were even discussed here on HN back in the day).
| sooyoo wrote:
| > but I won't rule it out, if only I had the financial
| means to try.
|
| Here is the problem: OP doesn't have the time. In such a
| situation, even if you have the money, you can afford to
| try one or two things long term, maybe three if you are
| lucky. If those turn out to be nonsense, that's it, you're
| dead or paralyzed or demented. You can't afford some
| esoteric nonsense in the bush because some stranger on the
| internet recommended it and a sketchy website pushed it.
|
| It's really sad that dubious actors are making a buck off
| of desperate patients and that's just as immoral as a
| dysfunctional health system.
| mush_room wrote:
| I am OP :). I really hope the future isn't so grim, I
| mean, to be honest it's me rejecting what is the most
| common outcome for people with MS, slow degradation. It
| pains me because just 3 years ago I was feeling so good,
| my brain was working great (due to a mix of
| circumstances, financial windfall, low stress, and pretty
| certainly a great mix of diet and exercise), I had so
| many product ideas and the energy to pursue them. Anyway,
| I digress... The thing is, as far as I know, no non-
| esoteric options provide what I'm seeking. As I've
| replied elsewhere, my initial intention was to collect
| (even very speculative) hints to future research and
| treatments that might do what current ones don't:
| restore, repair.
| sooyoo wrote:
| Oh I missed that, sorry. All the best to you!
| andrewmcwatters wrote:
| Could you not do this? Medical vacations are a thing--and for
| precisely this reason.
|
| > More concretely, are you suggesting that US and European
| doctors are ignoring science about MS and just take the
| money? And the Mexican doctors at this clinic somehow
| magically have a cure which the rest of the world, at least
| the western world, ignores to ... enrich themselves?
|
| I guess you're too young to have experienced having or to
| have known someone having an ailment that had a wide variety
| of ways it was understood and treated.
|
| What a disgustingly rude post.
|
| Maybe you don't have the experience, but emphatically yes,
| doctors in the US at least WILL take your money without
| knowing how to alleviate your issues.
|
| Do you not know how copays work? Do you think physicians say,
| "Oh, sorry this is beyond my expertise. Here's a refund for
| your time."
|
| No. They're getting paid.
|
| I know it sounds crazy but there's this phenomenon in life
| where people have different abilities and knowledge. It has
| nothing to do with what nation you live in either.
|
| > One of the huge red flags is the hush-hush "I'll send you a
| mail" Why this secrecy?
|
| Yuck. Like a preteen who can't handle a private conversation.
| mush_room wrote:
| [OP here]: It's too late to edit the message but if mods could
| pick it up (or anyone reading this), my email is actually
| mush_room_hn@proton.me not @protonmail!
| bkishan wrote:
| OP, don't worry, ProtonMail routes both email IDs to your inbox
| by default. You're good.
| mush_room wrote:
| oh, great, someone said their email bounced so I thought
| something had changed with Protonmail
| neltnerb wrote:
| I had my email bounce to protonmail.com but not proton.me
| and an not the original person.
|
| I don't think it's an exact redirect if it works at all...
| I assume it's a masked email address from the name, maybe
| those are treated differently?
| jddil wrote:
| This thread is terrifying.
|
| No, covid boosters don't cause MS.
|
| No, there isn't a magical Mexican clinic that fixes everything.
|
| No, light isn't going to cure you.
|
| Please stop giving out dangerous health info and stick to which
| JS framework is better HN
| pjdkoch wrote:
| Nomentatus wrote:
| That covid boosters could trigger an exacerbation is utterly
| unsuprising. You're right to think that doesn't nec show that
| disease progression is worse.
|
| However I do wish you wouldn't claim knowledge that new
| approaches don't work. Probably they don't - but that's why we
| do the experiments, you know.
| sooyoo wrote:
| This 1000x. You won't believe how much I want to upvote you.
|
| I feel so sorry for OP to have asked. It will be so hard for
| them to find the answers that are actually helpful and ignore
| every that's nonsense or actively harmful. They are desperate
| and likely don't have the energy to fight all this.
| mush_room wrote:
| Hey, I appreciate your intent, I feel I can sort through this
| fine after so many years with this. It's funny because my
| initial intent was collecting some speculation about _future_
| medical advances (even just "AI will solve this in 10 years,
| trust me, I'm working on it!"), just so, to be very blunt, I
| can convince myself that it's worth living if in the future I
| can be made whole again.
|
| It's true that newly diagnosed people might be more
| vulnerable to such things, I mean, I was and have pursued
| speculative things out of despair, so it's a fair warning to
| them.
| alexmanuel27 wrote:
| pama wrote:
| Yes please keep up the hope. As I mentioned in a deep
| thread below, the causal link between EBV and MS only got
| established in 2022 so there is hope that in 10 years time
| you will live through major medical advances. (I would not
| be able to disclose if I worked on it, but I am nearly
| certain that many other people work on it.)
| Broken_Hippo wrote:
| Welcome to the world of auto-immune diseases - or heck, the
| world of chronic incurable disease.
|
| Everyone wants something that'll help, and it feels like
| controlling something that _might_ make you feel better is
| better than doing nothing.
|
| With MS in particular (knowledge because of my own MS): A few
| folks haven't been entirely truthful about their treatment
| story. Combined with the fact that MS affects folks very
| differently (I got diagnosed around 40 and it is generally mild
| so far and I'm lazy) _and_ the most common form has "relapses"
| that are usually followed by a varying amount of recovery and
| remission, it makes a lot of sham cures look very promising.
|
| The only thing that has been clinically proven to slow down
| disease progression - and therefore, keeping some quality of
| life - are modern medicines, which are unfortunately expensive.
|
| I mean, of course you are going to be better off if you eat a
| generally healthy diet and move about when you can (difficult
| for some with MS), you are going to be better off. It isn't a
| cure, and if the supplements were, they'd be medicine and
| insurances/governments would pay for those instead of the
| pharmacy meds.
| Nomentatus wrote:
| As of two years ago modern medicines reduced exacerbations
| but did nothing to slow the progress disease, as you claim.
| If there are new and opposite findings, I haven't seen them.
|
| In chronic inflammatory diseases generally, treating yourself
| well often or usually has the paradoxical effect that your
| body now has more resources to attack you with, more
| viciously; whether re autoinflammation or autoimmune
| reactions. It cannot be assumed that being good to yourself
| will make you less miserable - although you will probably
| live longer.
|
| Re other things that help, smoking has now been shown to
| help, but earlier studies before people who smoked were
| pushed outside to do that showed the reverse.
|
| It's true that everyone with MS has a different straw to
| cling to, but those who swear by modern medicines without
| deep-diving into the empirical research are amongst this
| group, not contra. The history of dollar driven MS research
| and treatment is decades long and a rolling tragedy,
| economically and otherwise.
|
| A recent study has shown beans help. (Perhaps because soluble
| fiber is necessary for choline absorption?) But whether that
| study will hold up I know not.
|
| https://www.inverse.com/mind-body/diet-rich-in-beans-
| legumes...
| Broken_Hippo wrote:
| _As of two years ago modern medicines reduced exacerbations
| but did nothing to slow the progress disease, as you claim.
| If there are new and opposite findings, I haven 't seen
| them._
|
| Fewer exacerbations means fewer lesions: While your disease
| might progress, it doesn't do it at the same rate as it did
| before medications - or heck, even when comparing to the
| first medications. For most folks, this is exactly the same
| as no disease progress. It definitely means that our
| outlook is better.
|
| _In chronic inflammatory diseases generally, treating
| yourself well often or usually has the paradoxical effect
| that your body now has more resources to attack you with,
| more viciously; whether re autoinflammation or autoimmune
| reactions. It cannot be assumed that being good to yourself
| will make you less miserable - although you will probably
| live longer._
|
| From what I can tell, being active before you have damage
| _generally_ means it it a little easier to get some
| function back. Right now, the general advice is to stay as
| generally healthy as you can, within reason.
|
| _Re other things that help, smoking has now been shown to
| help, but earlier studies before people who smoked were
| pushed outside to do that showed the reverse._
|
| You are going to have to back this up: Everything I've read
| states that smoking - the act of inhaling smoke that has
| been lit - is detrimental and actually a risk factor. MJ
| helps some folks feel a bit better, but they recommend
| things like edibles or vaping over smoking a lit joint/cig.
|
| _but those who swear by modern medicines without deep-
| diving into the empirical research are amongst this group_
| I can swear by modern medicines because people smarter than
| I am have done the research, something I cannot say about a
| book written by someone not educated in medicine, nor about
| supplements that aren 't studied.
|
| _he history of dollar driven MS research and treatment is
| decades long and a rolling tragedy, economically and
| otherwise._
|
| And this can easily be seen with alternative medicines
| (diet, supplements, etc) and isn't special to any other
| major or common disease.
|
| _A recent study has shown beans help. (Perhaps because
| soluble fiber is necessary for choline absorption?) But
| whether that study will hold up I know not._ And if it pans
| out, health insurance companies and governments that run
| single-payer health plans would back up paying for
| nutritional education and possibly give folks beans, which
| are cheap. Taxpayers would demand things like this.
| Nomentatus wrote:
| A lot of gainsaying here.
|
| https://pubmed.ncbi.nlm.nih.gov/ is where to go see that
| modern drugs genuinely don't alter progression. I know
| this is surprising. Your experience is better your
| outlook, alas, is not. The amount of nerve damage over
| time visible on MRI is not lessened. Note that by far the
| majority of function loss from exacerbations is usually
| from pressure due to local inflamation sites that blow
| up; they press adjacent areas hard enough to cause them
| to go offline, but not enough to kill cells.
|
| Re being active etc - I think we agree here, but I can
| try to be clearer, and say you'll be more miserable
| _because_ your underlying health is better. I don 't
| advise people to harm themselves to limit immune
| reactions; but that is a risk if you, say, "feel better
| when you overexercise" and don't realize that you are
| causing your innate immune system (or adaptive in the
| case of autoimmune diseases) to downregulate _because_
| you are creating obstacles for your body, or actively
| harming it.
|
| Re smoking the most recent studies are trending your way.
|
| https://pubmed.ncbi.nlm.nih.gov/?term=Ms+smoking
|
| The study I read seems to have been an error burst, as it
| were. I'll edit out mentions of it elsewhere.
|
| There are many other sad medical research stories, as you
| say, but that of MS is unrelenting and so same same it
| really stands out as a money-sink and narrow-minded
| insanity.
|
| My many decades tell me that beans won't have big
| multinational companies shelling out influence dollars in
| Congress and Parliment on the side of beans, but I hope
| your optimism wins that point.
| [deleted]
| dang wrote:
| Whatever comments those were, they obviously aren't at all
| representative of this thread.
|
| This kind of supercilious putdown often gets upvoted because
| everybody likes to feel superior, but then it sits at the top
| of the page (where I saw it), adding off-topic meta noise.
| Please don't do that.
|
| Yes, there's a long tail of comments on the public internet,
| but to be on topic on HN, focus instead on things that are
| interesting.
|
| https://news.ycombinator.com/newsguidelines.html
| nextaccountic wrote:
| Maybe you should address the concern by removing dangerous
| medical info?
| lol_hn2 wrote:
| jddil wrote:
| Giving out dangerous medical advice was on topic for the
| thread?
|
| Yes my comment was intentionally an attempt to derail a
| dangerous thread, it worked for a bit and I'm glad it did.
| lol_hackerz wrote:
| indymike wrote:
| My dad had MS. He passed away a while back. It's a horrible
| disease, and I'm in awe of people who live the best lives they
| can while dealing with it.
|
| Because it is so horrible, and plays out over such a long time,
| there is an entire industry that preys on people with MS with
| false hopes, and miracle treatments (electric shock, photonics,
| bee stings, all kinds of potions and lotions). There's also a
| lot of research going on trying to get to the cause, find a
| cure, or slow the diseases progress. It's really hard to know
| the difference between genuine research, and snake oil.
|
| My Dad was a doctor. An MD, with a BS in chemistry and an a
| second BS in Biology. He was a scientist first, and a family
| doctor second. Every time someone came up with a potential
| cure, he'd drill into it. Most of the time, he'd read all the
| papers and come back with "this one is a dead end."
| Occasionally, he'd find something exciting. One in particular
| was "bee sting therapy". It was about what you think: get stung
| regularly by bees, and something in the toxin slows/stops the
| process. Dad fell for it, and after a couple of treatments, he
| came to the conclusion, "it just hurts." And he stopped the
| therapy. He never gave up on science, and kept trying to
| something that worked (he was highly involved with both the MS
| Society and the MS Foundation).
|
| MS is one of those diseases that really shows the limits of
| human progress. We know the "what", we have no idea on "how"
| and "why" (best guess as of now is Epstein-Barr virus, but that
| has been the best guess off and on for decades). This is
| despite billions and billions of dollars in research.
|
| Don't give up hope, and don't lose touch with reality.
| hirvi74 wrote:
| Isn't there a large genetic component to the condition too? I
| thought it was predominately found in people of Northwestern
| European decent. I guess, it would be a perfect cocktail with
| EB virus + the right genes?
| indymike wrote:
| The "perfect cocktail" theory is the current thinking
| around EBV but, it was current thinking 20 years ago and
| fell out of favor. This is why dealing with MS has been so
| hard. We don't know what actually causes the condition.
| hirvi74 wrote:
| Does Northwestern European descendants still have higher
| rates of MS? They have higher rates of my autoimmune
| disease fwiw.
| alexmanuel27 wrote:
| lol_hackerz wrote:
| ekianjo wrote:
| theteapot wrote:
| Fuck sake. Why are you focusing on these supposed terrifying
| nut jobs supposedly somewhere down there in the thread? That's
| the Internet. Focus on the person with MS asking for advice.
| hda111 wrote:
| It's not wrong that vaccine can cause autoimmune diseases. It's
| just extremely rare and the benefits outweigh the cost almost
| any time.
| hirvi74 wrote:
| Made mine worse, but it definitely didn't cause it. Then
| again, Covid would have probably made it worse, perhaps worse
| than the vaccine, too. Thankfully do not have MS, so I cannot
| comment on that part.
| leftismer wrote:
| thruflo wrote:
| I just want to recommend https://overcomingms.org/recovery-
| program/diet
|
| My wife has relapsing remitting MS and manages it very
| effectively with this diet.
|
| It's not easy -- cutting out lots of fats - but doing so has a
| really positive impact: reducing myelin damage, slowing
| progression and reducing relapses.
| kzrdude wrote:
| It sounds silly to mention, but for a person just in remission,
| it's hard to identify what helps since progression of the
| disease is not very visible. Fortunately enough, but it would
| be good to get on track with a helping diet.
| mush_room wrote:
| I'm putting my faith in the idea that reducing "leaky gut" is
| the key, along with eliminating allergens like dairy. I was
| doing pretty well all these years mostly avoiding coffee,
| dairy, and other things that increase leaky gut like MCT oil.
| My worst symptoms happened recently as I did all these
| things. The diet I'm on is meat-based, or, more
| illustratively, fiber-free. From my understanding fiber can
| often be actually harmful for leaky gut.
|
| I've avoided mentioning this too much in the comments because
| I didn't want to seem to be advertising this, although for
| full transparency, I feel that I must. It's just what I feel
| is the best best... I've also started (very) high-dose
| vitamin D, so-called "Coimbra protocol", which really needs
| doctor supervision which I don't currently have but will
| promptly.
| kzrdude wrote:
| Thanks for sharing :)
| Nomentatus wrote:
| The effect might be due to pushing people towards more beans
| (soluble fiber.) Interesting recent study shows beans help. If
| the effect is due to the soluble fiber you want to get beans
| daily, to keep the bacteria that are helping you, thriving.
|
| https://www.inverse.com/mind-body/diet-rich-in-beans-legumes...
| rtp4me wrote:
| philliphaydon wrote:
| What shot did she take? My mum has MS for... 8 years now? She
| got diagnosed when she broke her wrist and it didn't heal and
| has been on meds ever since. She's had 2 shots and a booster
| and is totally fine. She's 75. She had Pfizer.
|
| Edit: had>has
| rtp4me wrote:
| Pfizer for all 3 shots.
|
| Also, forgot to note, she also has Tinnitus now which did not
| appear until after taking the booster. Definitely something
| odd...
| philliphaydon wrote:
| Damn, I really hope my mum doesn't get worse :(
|
| I have Tinnitus since I was quite young, I used to complain
| when going into the lounge cos the TV made it worse.
| Thankfully after having covid and 3 pfizer shots mine
| hasn't got worse.
| Waterluvian wrote:
| Fwiw I got bad tinnitus after contracting covid. I was
| quite distraught after a week of loud ringing. But it's
| been going away and is almost gone about five months later.
| loa_in_ wrote:
| I first almost lost hearing, then as it came back over
| the weeks I got tinnitus, then over 4 months it's gone,
| back to normal since catching Cov
| Waterluvian wrote:
| It's reassuring to hear stories like this to know it's
| possible.
| loa_in_ wrote:
| At least I assume it's back to normal. Lots of things
| changed in my life around the same time, so I don't have
| perfect reference. But I am happy to report I hear the
| ringing of my wireless router again.
| tacet wrote:
| yeah, about week of loud ringing for me too. started
| about 5 days in. then another week of manageable
| loudness.
| tomcam wrote:
| I'll be damned:
|
| https://www.google.com/search?q=covid+tinnitus
| rtp4me wrote:
| Yep, and worst of all. Her doctor seems quite hesitant to
| link (or even recognize) any of these after-affects from
| the COVID shots to MS. Very frustrating to say the least.
| tacet wrote:
| did she PCR test for covid?
| rtp4me wrote:
| Yes, a few times. Always comes back negative.
| user_7832 wrote:
| Have you heard of/has your wife tried low dose naltrexone
| (LDN)? Major disclaimer - I'm not a doctor/this isn't medical
| advice, but LDN has been found somewhat helpful for MS (and a
| lot of autoimmune conditions) - a friend recommended it to me
| after he benefited from it himself for his autoimmune
| condition.
|
| LDN is also apparently gaining interest for long covid
| (https://www.reuters.com/business/healthcare-
| pharmaceuticals/...).
|
| I wish the best for your wife.
| rtp4me wrote:
| Thanks for the reply. No, I don't believe her doctor has
| mentioned LDN (yet). I will ask.
|
| She is trying to do as much as she can w/out getting more
| meds. For now, she has been managing her stress as best she
| can as well as going to a physical therapist to help with the
| dizziness, muscle soreness, etc. The therapy has helped quite
| a bit, but the issues still persist. We hope these conditions
| just go down over time...
| stevespang wrote:
| phoronixrly wrote:
| As a person with a good friend (computer scientist) who has MS, I
| wish you the best!
|
| I take it you're in contact with physicians that are tracking
| your condition and its development, and you're not just relying
| on your judgement about your own mental state? If not, please get
| in contact with specialists ASAP, do not rely just on HN for
| medical advice.
|
| Apart from the above, the best I could do is tell you to try to
| not be too hard on yourself. I know this sounds strange, but try
| to acknowledge the situation and that those are the symptoms.
| Work on accepting this as normal, so that _it does not stress you
| out and lead to acceleration of the condition_. If necessary find
| a person to talk to to help you deal with this, and to help you
| find what life changes to make so that it gets easier for you.
|
| Just hold on. The science is catching up, and eventually it will!
| Stay strong, and do not give up!
| mush_room wrote:
| That's good advice, I'm not seeking medical advice, as anyone
| with a long history with such a disease I'm battle hardened in
| this area, again, it's been a long time.
|
| To be honest initially what I was after was some hints on even
| highly speculative future medical advances. I don't personally
| know of anything available right now that could, for instance,
| restore brain volume, heal myelination scars, etc. At this
| point even "don't worry, I work in AI and within 10 years it
| will find a cure" would offer a bit of hope I'd take.
| androa wrote:
| Been diagnosed for about 10 years with RRMS.
|
| One thing that has really helped me is the combination of remote
| + pair programming. Having an extra mind to work together is
| amazing. Doing it remote removes the stress of commute,
| noise/stress from the office, and allows for relaxing breaks
| where I can even lay down if I want.
|
| Using note taking frequently, small commits, TDD and drawing
| diagrams continuously while pairing also helps keep my mind in
| context and picking up the thread after breaks. Whimsical has
| been a fabulous tool for this.
|
| I've been of Aubagio before, and now I'm on Tysabri. The
| difference is staggering. Aubagio gave me tons of side-effects
| like hairloss, indigestion, increased fatigue and general feeling
| of being sick. And it still was not able to prevent flare-ups and
| lesions.
|
| With Tysabri I can't identify a single side-effect. In the three
| years I've been on it I've not had a single flare-up or lesion
| identified after MRs.
|
| Something I also believe helps me a lot is simply living in a
| country with healthcare and strong welfare. Knowing that when it
| eventually comes to not being able to work anymore, I have public
| disability pension that will cover 63.5% of my current salary
| until I reach retirement age (where normal retirement takes
| over). Having this knowledge removes a lot of stress and despair,
| which I genuinely believe helps keeping the disease under
| control.
| Mezzie wrote:
| I miss Tysabri. I was one of the lucky ones who had the 'side
| effect' of feeling physically great for a week afterwards.
|
| But of course Medicaid won't pay for IV infusion. So nope!
| emmelaich wrote:
| Another upvote for Tysabri. Makes a huge difference.
|
| Regarding Whimsical - never heard of it. So for myself and
| others: https://whimsical.com/flowcharts
|
| > _" Whimsical combines whiteboards and docs in an all-in-one
| collaboration hub."_
| leftismer wrote:
| personjerry wrote:
| Hi, there's an active MS community on Discord:
| https://discord.gg/Mr6cg3rE
| underdeserver wrote:
| > symptoms like "mild" dementia. Difficulty multitasking, make
| silly mistakes, mentally tired easily, emotional issues, etc.
|
| I don't have MS (that I know of), but suffered these exact
| symptoms in a big way due to long covid. Can your thing be due to
| covid and not MS?
| mush_room wrote:
| This is fascinating, as I've said for many years I had all but
| forgotten about the MS, and when I first started having
| worsening symptoms they seemed to match exactly what some of
| the worse afflictions of long Covid I had read about.
|
| And then just the other day I read somewhere that some research
| has found demyelination happening in patients with long Covid.
|
| As for me, I haven't had Covid, and the symptoms are really
| common cognitive symptoms of MS. I feel sorry for having
| somewhat dismissed long covid as psychosomatic at times, while
| it might be for some (even the majority) of cases, I'm fairly
| certain there is something akin to MS that happens in the
| brains of some people after they have Covid, maybe it's even
| triggering something like MS, or MS... hopefully not.
| underdeserver wrote:
| How do you know you haven't had covid? Lots of people were
| asymptomatic.
| mush_room wrote:
| I can't be certain, I haven't gotten tested, but the
| symptoms I've experienced have been gradual, and have
| tracked with new neurological symptoms of the sort that
| people with MS usually get (numbness, spasticity, etc.).
| Could it have been triggered by asymptomatic Covid? I don't
| know, but there have been enough factors already that were
| sufficient. Again, this is typical of MS and demyelination.
| kzrdude wrote:
| Get enough sleep! It was one of my major problems and remains the
| constant item to battle with. Without sleep I couldn't even plan
| to do helpful things for my life, just could manage to "get by".
| roschdal wrote:
| tomohawk wrote:
| A family member went on a diet that helped out considerably. It
| is grain free, lectin free, and nightshade free. It's a hard diet
| to follow, but the results have been tremendous.
|
| This family member knows almost immediately if they have
| accidentally consumed one of these.
|
| Do your research, and if you decide to try this diet, set
| yourself up mentally for following it very strictly for one month
| to see what the results might be. You will need to stay away from
| restaurant and pre-prepared foods
| mush_room wrote:
| Thank you. I have been experimenting and evolving with diets
| since shortly after diagnosis. The first year I was symptomatic
| but it went away pretty dramatically after starting Paleo, I
| believe because general inflammation went down.
|
| I'm also pretty sure that I'm doing so badly because of the
| stress I've experienced during the pandemic, really at a level
| I couldn't imagine, and, having forgotten I have MS, I didn't
| do nearly enough to counter it and instead used coffee and
| dairy, two things known to be avoided with MS (by some patients
| at least, doctors IME don't even mention it).
|
| I would do anything and sacrifice anything if it could remedy
| the current issue, but it seems it's more related to some
| longer-term evolution that doesn't respond to these things...
| We'll see. I've only quit coffee about 2 weeks ago when I
| definitely noticed my legs going numb after running wasn't
| because or overexertion... And then I made the connection with
| my cognitive issues.
| antiherovelo wrote:
| Moving to an entirely plant based diet has made all the
| difference in the world for me. It isn't a cure, but
| excellent nutrition makes a HUGE difference.
|
| Eating entirely plant-based can also be done very very
| cheaply if you're careful.
|
| Walking or other gentle exercise is essential - it's hard. It
| hurts. But it WILL slow down the progression of the disease.
| Keep moving!
|
| Do some reading about your legal rights - if you have a
| diagnosed case of MS in the United States, you have all kinds
| of ways of protecting yourself from job termination. If your
| HR department isn't evil, they should help you here. If they
| are evil, keep careful records of everything so you can sue
| the crap out of them if they fail to protect you as the law
| requires.
|
| Don't give up! It's a disease, not an identity. Don't let it
| define you or control your thinking.
|
| You've got this.
| loceng wrote:
| Some people cheer for the opposite: that a carnivore diet
| (or animal product only, but dairy/milk/cheese is bad and
| highly inflammatory for many) is what essentially cured
| them of mainly ailments.
|
| So, just to put that balanced perspective to OP.
| sooyoo wrote:
| The conclusion from such dietary changes always seems to
| be that being more conscious about your food is key. High
| quality ingredients, no pesticides or enhancers that are
| meant to make crap taste less crap. Then in the end it
| doesn't matter whether you go carnivor or vegan or
| whatnot. Just don't eat everything deep-fried or full of
| refined sugars.
| loceng wrote:
| Well, I fully agree with your first two sentences. Then
| genetics likely are the next in line for what is healthy,
| not harmful, for your body.
| tomohawk wrote:
| I forgot about the dairy part - also dairy free.
|
| The brain fog can sneak up on you. Try to keep a journal of
| everything you're eating and how you're feeling. It will help
| you notice issues and track them down.
| kzrdude wrote:
| I thought following AIP was very helpful but I couldn't follow
| it for more than a year.
| jasfi wrote:
| EDIT: deleting this comment, too much negative feedback.
|
| For cognitive benefits, try mental math apps.
| rtp4me wrote:
| Is this an over-the-counter herb? Sounds like my wife and I
| need to do some research on this...
|
| Edit: Yes, in fact, it is over the counter. Seems GNC,
| Walgreens, etc has this on the shelf. Thanks for recommending
| it!
| [deleted]
| jasfi wrote:
| Sure, as another poster wrote, be careful with MS it seems,
| there could be an immune stimulating effect. For stress in
| general it's very good though. Also it can be taken
| infrequently and you can still see a lot of benefits.
| sooyoo wrote:
| > be careful with MS it seems, there could be an immune
| stimulating effect.
|
| If you know this, then why are you bringing the herb up as
| a response to somebody explicitly saying they have MS and
| are desperate for help?
|
| It's like somebody screaming their house is on fire and you
| recommend trying a bucket of gasoline. And deep in the
| comments you'd mention "oh by the way, rhe gasoline could
| make the fire worse, and also, I make money off the
| gasoline-ordering-links that I sent you"
| jasfi wrote:
| I didn't know it at first. Also, as pointed out, the risk
| is theoretical.
| sooyoo wrote:
| If that's the case then isn't it time to edit the comment
| and remove the harmful information or at least put a fat
| warning along side it, instead of keeping it up there
| together with your affiliate links that are _still_ up
| and _still_ earn you money?
| GaylordTuring wrote:
| If you read this whole thread, you can see that OP
| recommended to try the treatment before they knew about
| this MS specific risk.
| alberth wrote:
| > Have you tried Ashwagandha?
|
| Please only take medical advice from medical professionals.
|
| See excerpt below:
|
| "Ashwagandha is an herbal remedy often categorized as an
| adaptogen, and it is sometimes recommended for MS-related
| fatigue. This compound does stimulate some cells in the immune
| system, so it _poses a theoretical risk in MS_."
|
| https://www.va.gov/WHOLEHEALTHLIBRARY/tools/multiple-scleros...
| jasfi wrote:
| Thanks for finding that! Even a theoretical risk needs to be
| underlined. It's interesting that the same article notes that
| exercise also stimulates the immune system and that the risk
| really is theoretical at this point. But good to note it.
| alberth wrote:
| I have a family member with MS and it's completely
| debilitated them.
|
| I completely empathize and totally get why alternative
| treatments should be investigated.
|
| It's just a super tricky problem because everyone
| experiences MS differently and it's non reversible nature
| makes it super scary.
|
| I too wish modern medical could better help. So maybe
| Ashwagandha is it, just please have that conversations with
| your doctor.
| sooyoo wrote:
| Affiliate links? Seriously? Why are so many people trying to
| make money off this poor guy?
|
| Not just does this bring money into your pockets, on top of
| that there is no evidence that withania somnifera even helps
| with any disease.
| jasfi wrote:
| My primary cause with the site is informational. But if I
| could bring in some (likely minimal) income, I could spend
| that on ads to market the site. I don't think that's immoral.
|
| That herb has seriously helped me with stress.
|
| Here's one study:
| https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3573577/
|
| I need to add that to the site.
| sooyoo wrote:
| While at it, please also add the references mentioned in
| this thread here that this herb poses a risk to those
| diagnosed with MS including a big warning. This is entirely
| missing currently, and since you are aware of it, you are
| purposely misleading your audience to make a buck. Yes,
| that's immoral in my book.
|
| (Part of your purported honesty would obviously be to
| inform your readers that ordering through your links will
| give you cash kickbacks.)
| jasfi wrote:
| Kickback? How is that an illicit payment?
| mush_room wrote:
| Oh man, I don't know how I messed that up, it's mush_room_hn at
| proton.me not protonmail!
| Nomentatus wrote:
| I do know one success story, so I should share it. A programmer
| and chemist who moved to my warm, sunny coastal city to die with
| a severe case of progressive, not RR MS. That was more than
| twenty years ago. He had been told he probably only had months to
| live. His disease has been halted for more than two decades, but
| much vision and some movement hasn't returned since nerve damage
| tends to be permanent.
|
| I've known him for maybe fifteen years, and he's in better shape
| now than ever.
|
| He swears antifungal treatments are the reason, but he also gets
| several hours of direct sun every day. His fungal beliefs have
| altered his diet some, but I don't think he's doing anything very
| unusual there.
|
| Re sun: melanin is known to be good at killing viruses (etc, etc)
| so the Epstein-Barr connection might be relevant here. We've
| learned revolutionary things about melanin in the last two
| decades, which hasn't reached clinical practice at all. Such a
| delay is par for the course.
|
| This is speculation of course (and his speculation varies from
| mine) but since it's the one case of definite results that have
| held for decades, I thought I should report it.
| maksimur wrote:
| > Re sun: melanin is known to be good at killing viruses (etc,
| etc) so the Epstein-Barr connection might be relevant here.
| We've learned revolutionary things about melanin in the last
| two decades, which hasn't reached clinical practice at all.
| Such a delay is par for the course.
|
| Do you mean melatonin?
| BenjiWiebe wrote:
| Melanin comes from sun exposure, no? Pretty sure he meant
| melanin.
| Nomentatus wrote:
| We have indeed learned amazing things about melatonin and
| light exposure and iprgcs over the last four decades, and I
| think that's very important, too. So I'm glad you've
| mentioned it: a natural night with extremely consistent start
| and stop times (or following the seasons strictly, which is
| better) absolute darkness (except red light is okay) and nine
| hours of it is a very good thing for health - mental and
| physical.
|
| But yup, I meant melanin, the more recent outpouring of
| research there is amazing. Melatonin is an amazing
| antioxidant, just amazing, and as a hormone it initiates
| processes that fight illness at night, including pathogens,
| but I don't know of it having any direct action against
| pathogens.
| mush_room wrote:
| It's funny because pretty much the only thing the doctor told
| me when I got diagnosed was not to smoke.
|
| About the fungal stuff, I'm reminded the common saying (around
| MS circles at least), that "everybody's MS is different". I'm
| not sure who much I agree with that, given that we now have
| solid evidence of a link with EB virus, but it might be that
| along the chain of factors some people have "fungal infection",
| others "parasites" (as I've recently heard), etc.
|
| Could you say how long it's been since he moved and where?
| Several people here are talking about the important of
| sunlight, and I know that to be true for me, I always feel much
| better with sun - not vitamin D - sun and sunlight, and I'm
| seriously thinking about the possibility of a move, even though
| I have no clue how I would practically achieve it atm.
| Nomentatus wrote:
| I've removed my mention of a study saying smoking helped,
| more recent research contradicts it.
|
| He moved at least twenty years ago, to a sunny but more
| northern west coast city and has remained here since. (I
| wasn't being as clear as I thought. I've now edited my post,
| thanks!)
|
| It's reasonable to suppose that some environmental factors
| might be involved, but vary. After all, Epstein-Barr is at
| best a necessary condition for MS, it's very far from
| sufficient. Logically it can't be the whole story or nearly
| everyone would have MS.
|
| The coast is useful because the sun is kinder, more filtered.
| Even if UVB turns out to be necessary, which I don't know of
| course, it's nice not to worry too much about the time of day
| you're out. It might be worth noting that a century ago when
| sun therapy was in vogue, they recommended the three hours
| after sunrise, only. But they also put resorts in mountains,
| esp in Europe, to get a longer season of effective full
| spectrum light.
| hirvi74 wrote:
| > Logically it can't be the whole story or nearly everyone
| would have MS.
|
| Sure, but I think some people are just more susceptible to
| certain things. I think it would more likely that everyone
| with <insert right genetic lottery> who gets EB will more
| than likely develop MS.
|
| A majority of people that smoke tobacco will not develop
| lung cancer, but a majority of people that have lung cancer
| smoked tobacco.
| alexmanuel27 wrote:
| emmelaich wrote:
| This makes sense because the incidence of MS is much larger as
| you move away from the equator; the incidence at 20deg is half
| that of 60deg away.
|
| Could that explain the higher incidence among females too? Do
| males spend more time outdoors?
| Nomentatus wrote:
| Interesting thought; maybe however women are more prone to
| illness throughout life, sadly.
| Mezzie wrote:
| I have MS and was diagnosed in 2016. My first relapse was at the
| end of 2014, during my final semester of graduate school.
|
| My brutally honest answer is that I did three things:
|
| - I'm making some really unwise health decisions in order to meet
| my current needs. In addition to having MS, I'm the primary
| breadwinner/sole caretaker for my sister, who has bipolar. I was
| taking duloxetine for nerve pain and realized it was causing a
| lot of mental slowness, so I'm going off of it. Likewise, I tried
| gabapentin and it made me an idiot, which wasn't acceptable. So I
| just cold knuckle a lot of my pain. I'm also not on any DMDs
| right now because insurance companies can never allow consistent
| access. Every time I go on and off my Tecfidera, I go through hot
| flashes like I'm menopausal and shit to the point where I'm
| dehydrated for 2-3 weeks. I can't do that 2-3x a year when some
| paperwork is late because I HAVE to hold down a job/make money.
| Be ruthless about the trade offs your symptom meds have. (I do
| love my tizanidine though).
|
| - Used my programming/computer/systems thinking skills to game
| the hell out of the perverse incentives in our society. I've paid
| absolutely zilch on my student loans and kept them in constant
| forbearance since I was diagnosed. I KNOW I'm going to end up
| with a disability discharge at some point, why would I pay
| anything? Likewise, I don't save money because I know that when I
| end up disabled, there are asset limits. So I spend my money on
| 'fun' things that either last for years (I bought winter coats
| that will keep me warm for 40+ years, for example) or have resale
| value that won't be seized. My sister and I switch up how we
| manage our household financially (and how we present what we do)
| in order to be a household when it benefits us and not be a
| household when it doesn't.
|
| - Shopped out my skills to my new social class. Think of it like
| being a jailhouse lawyer: There are very few people in the
| lumpenproletariat (to be blunt, that's where disabled people who
| can't work conventional jobs are) with the skills we have. Or at
| the lower end of working class society. I'm working retail at the
| moment and my physical slowness is offset by the fact that a
| small business with 5 total employees now has somebody with some
| IT/tech background on staff. They can't justify hiring a whole
| position to do it, but it's worth putting up with my memory
| lapses and being a bit slower for some menial tasks (e.g.
| cleaning) if I can do the 5-10 hours a week of tech work they
| need and pick up new tasks like receiving easily to cover staff
| shortages (because again: five people). If you're comfortable
| going off script/your morals allow it, you can do things like
| writing papers/doing assignments/helping people game the systems
| you used to participate in on the downlow. You can earn major
| bank this way and keep payments untraceable.
|
| The biggest advice I can give to you is to sit down and _very
| thoroughly_ review your morals and where your lines are. You are
| right to fear the future - we live in a system with institutions
| that demand our dependence and vulnerability if we interact with
| them. Hand-outs and help are only given to the truly destitute
| (e.g. rent assistance usually requires matters to have progressed
| to the point where an eviction notice has been served), and the
| game theory /optimization answer is to use your skills at
| navigating professional environments to fake destitution. Or to
| go outside the system altogether.
| mush_room wrote:
| I like your attitude, I mean, specifically that you are so
| resourceful. I think this kind of thing can bring it out of
| people. I wish you all the best, friend.
|
| And thank you.
| Mezzie wrote:
| :)
|
| I wanted to give some advice as someone else who has to go it
| alone. I'm guessing that you're either from poverty/a lower
| class background like I am OR that you have an abusive family
| controlling resources (like my mother's family). Making it as
| a disabled person looks very different depending on whether
| or not you have a safety net/professional network/etc.
|
| Another thing to keep an eye on since you mentioned being a
| bit blindsided by the cognitive effects is _emotional_
| effects. I can still program, but my ability to emotionally
| regulate has gone way down and I 'm very emotionally labile
| in a way I wasn't before. Which means I can't exist well in a
| professional environment because white-collar work means you
| have to mind your Ps and Qs, hide your impoverished
| background (always be careful about what you say), etc. Which
| I can't do. Everybody in retail/service work is traumatized,
| so they'll overlook a random crying session or a rant with a
| few f-bombs a lot easier.
| mike128 wrote:
| I'm currently reading "The myth of normal" by Gabor Mate, MD. Not
| a book about MS specifically but he presents there some cases of
| MS which were managed using some non-standard approaches. It
| might be interesting for you what he has to say about the causes
| and 'treatment' of the illness.
| mush_room wrote:
| Thank you, I love Gabor Mate, I mean I'm sort of attached to
| him for being such a kind person, and I love hear him talk. I
| didn't know his book also touches on MS. Just got the
| audiobook, thanks!
| pezo1919 wrote:
| You might research chlorine dioxide.
| throwaway6336 wrote:
| (Throwaway account.)
|
| I also had my first flare-up in years with the pandemic, it was
| bad enough that, combined with world events, I sort of lost hope
| and flipped the table.
|
| We moved to a new country in the tropics, a medical tourism
| destination with good support systems and schools. To be honest,
| I assumed it would be a place I could more easily afford long-
| term care and where our savings would go further after I couldn't
| work anymore - I was in a pretty bad place. I did keep my job
| remotely after a brief sabbatical, which was great.
|
| It was a dramatic change for all of us, but since the move
| everything has been... pretty great. I don't know what changed;
| maybe it's the sun, the change in diet, the new clinic, or maybe
| (probably) the huge reduction in stress and all of the above.
| Maybe just random chance. But I'm physically active, I'm more
| productive than I've been in a decade (my short-term memory is
| shot and my long-term is fuzzy, but I make a _lot_ of lists and
| notes), and I 'm optimistic for the first time in forever. I had
| no idea how much stress and fear I was carrying before, not until
| it started to release.
|
| I'm not saying you should drop everything and move South, but I
| am saying things _can_ get better. But even if they don't, now is
| a time you get to make choices about the rest of your life. You
| may find, as I did, that by choosing your life you also choose to
| live. We're all just making the most of what we have, some have
| less and some have more, what defines us is our attitude.
|
| (edit: that sounds a bit overly optimistic as I read it now. I
| should be clear that I don't have a miracle cure, I haven't fully
| recovered from my last episode, and I know there are challenges
| and more degradation on the horizon. I'm just in a much better
| headspace and environment now, and a lot of that came from taking
| control of my life.)
| mush_room wrote:
| Thank you, I was just making this remark in another reply, that
| a move to the somewhere with constant sun would be so helpful.
| I need to take this seriously. Thanks.
| AutumnCurtain wrote:
| Would it be too invasive to ask the country you moved to, from
| someone with some similar history?
| mush_room wrote:
| I would also like to know...
| alfor wrote:
| Try infrared light therapy. (sun, infrared heater or specialized
| light)
|
| We recently found out that all of our mitochondria in our cells
| need infrared light to get rid of oxidative stress. Our modern
| environment is devoid of infrared light: create all sort of
| inflammation and autoimmune diseases.
|
| I had similar symptoms(peripheral neuropathy, headache), heal
| myself and my eczema that I had every winter in the last 23 years
| with a few minutes per day in front of a infrared space heater.e
|
| It's this doctor that gave me the idea to try it out.
| https://youtu.be/5YV_iKnzDRg
|
| I also know someone who was dying of IBS in the hospital, at some
| point he say f*ck it if I am going to die it will be under the
| sun. He checked out of the hospital, whent to mexico (from
| Canada) and healed himself without medication.
|
| I think a lot of our modern problems are caused by our
| environment (vit-d, infrared, and other things.)
|
| I hope people try it out and that it help someone. Check out the
| videos of Medcram, many research papers have been done on this.
| adamgordonbell wrote:
| I'm curious about this. Does just being near a space heater
| work? Isn't all heat infrared light?
| Nomentatus wrote:
| Yes - not as intense, but that's not nec bad. Oil filled
| heaters are an esp reliable, but sunlight has lots of red and
| infrared, too. Melanin can probably make good use of infrared
| light (and other intense light) to help sterilize whatever is
| passing through your interstitium. Given the Epstein-Barr
| connection that might (or might not) be helpful.
| alfor wrote:
| From what I saw it is the near infrared (close to visible
| light) that is more effective. I tried with an space heater
| with a reflector: https://www.costco.ca/presto-heatdish-plus-
| tilt-parabolic-he...
|
| My reasoning was that it emit all infrared even visible red
| light.
|
| It worked really well for me. Got my eczema under control
| after a few days at 1h/day.
|
| But from what I saw in the research papers the inflammation
| is from cellular respiration (affect all the body) and the
| results of this inflammation can manifest in all kinds of
| ways.
|
| You can also feel it, it's soothing, much more than just a
| more heated room.
|
| I think that we used to have that infrared before with
| fireplaces in colder climate, but now it's almost all gone.
| mush_room wrote:
| I love red light therapy (I have an combo red/infrared light
| that I sometimes use), but nothing rivals the sun. I have often
| thought that if I could move somewhere on the equator I would
| probably do much better, energy-wise. I don't think it would
| affect the long-term brain issues I mention much though.
|
| I have started a very high dose Vitamin D protocol (Coimbra), 2
| weeks ago. I need to find a doctor to supervise it as the
| dosages are truly immense but it's the only thing available to
| me ATM that gives me some hope.
| stuaxo wrote:
| Not MS but I had brain fog for a year after having Covid.
| mush_room wrote:
| I've read somewhere that long Covid presents with demyelination
| just like MS... I so much forgotten about having MS that at
| times I wondered if I didn't get covid unknowingly, because
| they symptoms some people described were so similar to what I'm
| feeling.
| skyllo wrote:
| Also had it for 15 years, I was sharper in my 20s than now but
| now and I think age and MS have affected that. I realise I'm at
| my best when not stressed, well rested and happy. However I'm not
| always in control of those. Stress is easier to deal with as I
| talk to my employers about my condition and I avoid anything
| stressful when possible. I still feel useless some days and have
| bad brain fog and can't think clearly, it gives me a lot of
| imposter syndrome.
|
| Im currently moving somewhere else to get better rest. And my
| happiness is in progress, I tried anti depressants but I get
| anxiety and I tried CBT but it didn't work either. I do also swim
| regularly which helps too but still not enough. Im hoping this
| move will help. However its gone on for so many years that I
| think I will seek a professional soon.
|
| Covid and the pandemic definitely affected me, I couldn't walk
| properly for weeks after recovering from it. I used to do 20min
| walk every day to recover and just to keep active and get out. My
| depression got worse (was getting CBT in days before lockdown)
| but a few friends of mine play regularly online so I got to be
| social at least and talk about it. To add to this, I also quit my
| job before lockdown to travel so I was unemployed for a year in
| pandemic. I remember going to cafes when things partially opened
| to practise interview questions and did little projects. I
| finally got a job the next year.
|
| I'm still worried I won't be strong enough to travel one day, my
| max distance walking is 1.5km, give or take, without a rest, I
| could go a lot further only a few years ago.
|
| I know MS affects everyone differently and it can be a very
| hidden condition. My life could of been quite different without
| it but it could have been worse. Im lucky to have found a job
| coding and the silver lining of the pandemic is wfh. I see it
| like you have to play with the cards your dealt and whatever you
| can change for the better then try to. It's not been an easy road
| till now but I try and remain hopeful for the future.
|
| I know it must be even harder considering your circumstances and
| your health. I hope this helps to know your not alone at least.
| mush_room wrote:
| Thank you. I hope you do better, it's heartbreaking how things
| can change with this.
| skyllo wrote:
| Thank you! Me too :)
| alexmanuel27 wrote:
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