20 ms·

Ask HN: HNers with multiple sclerosis, can we get in touch?

• leftismer 4y ago
• roschdal 4y ago
• bennyelv 4y ago
  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 4y ago
    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 4y ago
      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 4y ago
        I thought HSCT could halt the disease entirely, but I'm not sure... It's the silent progression of the disease that worries me.
        • bennyelv 4y ago
          Me too. I can see on my MRIs that my brain mass is decreasing, even though there are no new lesions. I'm not quite 40 years old yet and am physically and mentally very active. Does it matter? Time will tell...
• deleted 4y ago
  [deleted]
• lakeeffect 4y ago
  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.
  • citboin 4y ago
    What do you mean by “the walking pill”?
    • batch12 4y ago
      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 4y ago
        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.
  • 4y ago
• k__ 4y ago
  "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?
  • f6v 4y ago
    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 4y ago
      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 4y ago
        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.
  • jll29 4y ago
    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.)
  • rtlfe 4y ago
    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 https://news.ycombinator.com/item?id=33297849
• rtp4me 4y ago
  • philliphaydon 4y ago
    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 4y ago
      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...
      • Waterluvian 4y ago
        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_ 4y ago
          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 4y ago
            It’s reassuring to hear stories like this to know it’s possible.
            • loa_in_ 4y ago
              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.
• tomohawk 4y ago
  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 4y ago
    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.
    • tomohawk 4y ago
      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.
    • antiherovelo 4y ago
      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.
• stuaxo 4y ago
  Not MS but I had brain fog for a year after having Covid.
  • mush_room 4y ago
    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.
• bartpeeters 4y ago
  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.
• rancar2 4y ago
  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-Support/Join-a-Local-Support-Group 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/ 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/ 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-and-Home/Insurance-and-Financial-Information/Social-Security-Disability/Social-Security-Disability-Insurance 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/ 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 4y ago
    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.
• breck 4y ago
  Have you read Breath by James Nestor (or the audiobook)? Not sure if that would help, but it couldn't hurt.
• thruflo 4y ago
  I just want to recommend https://overcomingms.org/recovery-program/diet 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 4y ago
    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 4y ago
      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 4y ago
        Thanks for sharing :)
  • Nomentatus 4y ago
    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-study https://www.inverse.com/mind-body/diet-rich-in-beans-legumes...
• skyllo 4y ago
  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 4y ago
    Thank you. I hope you do better, it's heartbreaking how things can change with this.
    • skyllo 4y ago
      Thank you! Me too :)
• daoist_shaman 4y ago
  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 4y ago
    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 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.
• benzesandbetter 4y ago
  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.
  • sooyoo 4y ago
    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.
• loceng 4y ago
  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/ https://www.emcell.com/treatments/multiple-skleroze/ There are free documentary video(s): https://stemcellsmovie.com/ https://stemcellsmovie.com/ or https://www.emcellexperience.com/emcell-videos/ 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 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 4y ago
    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 4y ago
      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.
• stevespang 4y ago
• jasfi 4y ago
  EDIT: deleting this comment, too much negative feedback. For cognitive benefits, try mental math apps.
  • rtp4me 4y ago
    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 4y ago
      [deleted]
    • jasfi 4y ago
      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 4y ago
        > 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 4y ago
          I didn't know it at first. Also, as pointed out, the risk is theoretical.
          • sooyoo 4y ago
            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?
• pezo1919 4y ago
  You might research chlorine dioxide.
• alfor 4y ago
  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 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 4y ago
    I'm curious about this. Does just being near a space heater work? Isn't all heat infrared light?
    • Nomentatus 4y ago
      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 4y ago
      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-heater.product.100752388.html 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.
• axpy906 4y ago
  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.
• mush_room 4y ago
  [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 4y ago
    OP, don’t worry, ProtonMail routes both email IDs to your inbox by default. You’re good.
    • mush_room 4y ago
      oh, great, someone said their email bounced so I thought something had changed with Protonmail
      • neltnerb 4y ago
        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 4y ago
  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 4y ago
  • sooyoo 4y ago
    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 4y ago
      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.
      • pama 4y ago
        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.)
      • alexmanuel27 4y ago
        You have to live I note present. We all die. MS just makes you fear for the future. Best advice I have is use a PMT (if your doctor agrees) and slow the progression so advances in medicine can cats up. Exercise, good diet, controlled blood pressure and cholesterol are important. Few die form MS, but it makes you weaker to other conditions, so maintaining good health is key. Be present and understand that there are many in far worse situations than yourself. For my condition there is one DMT (as I have PPMS) called Ocrevus, and there are trials for other drugs. Time will tell what works well, but hope springs eternal. Once last point: it is diagnosed by Venn diagram: the inter station of MRI lesions, mobility issues, spinal fluid bands. It is a circumstantial conclusion: we are in the early days of understanding this condition. Just remember that life is terminal and enjoy every day to its fullest.
• phoronixrly 4y ago
  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 4y ago
    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 4y ago
  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 4y ago
    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!
    • relaunched 4y ago
      Biogen offers non-income dependent financial aide that covers $20k a year towards the drug, and $2-3k a year towards the cost of infusions.
  • emmelaich 4y ago
    Another upvote for Tysabri. Makes a huge difference. Regarding Whimsical - never heard of it. So for myself and others: https://whimsical.com/flowcharts https://whimsical.com/flowcharts > "Whimsical combines whiteboards and docs in an all-in-one collaboration hub."
• personjerry 4y ago
  Hi, there's an active MS community on Discord: https://discord.gg/Mr6cg3rE https://discord.gg/Mr6cg3rE
• throwaway6336 4y ago
  (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 4y ago
    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 4y ago
    Would it be too invasive to ask the country you moved to, from someone with some similar history?
    • 4y ago
• fredgrott 4y ago
  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.
• bufordtwain 4y ago
  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.
• leftismer 4y ago
  Hey tried to send you an email but the recipient's address was rejected because the address does not exist.
  • detaro 4y ago
    https://news.ycombinator.com/item?id=33298609 https://news.ycombinator.com/item?id=33298609
• leftismer 4y ago
• underdeserver 4y ago
  > 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 4y ago
    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 4y ago
      How do you know you haven't had covid? Lots of people were asymptomatic.
      • mush_room 4y ago
        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.
• 5mv2 4y ago
  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 4y ago
    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 4y ago
      I am considering moving to Canada, do you have a link about this?
      • Mezzie 4y ago
        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/services/immigrate-canada/inadmissibility/reasons/medical-inadmissibility.html https://www.canada.ca/en/immigration-refugees-citizenship/se... [1] = https://www.washingtonpost.com/posteverything/wp/2017/02/03/canada-is-a-progressive-immigration-policy-dream-unless-you-have-a-disability/ https://www.washingtonpost.com/posteverything/wp/2017/02/03/...
• svillar 4y ago
  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.
• graemebenzie 4y ago
  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-medical-records-implicate-common-virus-multiple-sclerosis https://www.science.org/content/article/two-decades-soldiers...
• kzrdude 4y ago
  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".
• Mezzie 4y ago
  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.
• dnndev 4y ago
  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 4y ago
    I have PPMS and have been trying acupuncture. Symptoms feel a tad better, but might be placebo. Correlation is not causation. However, my perspective is that the MS weakens the signal, and acupuncture might just turn up the volume. Separately, ongoing physical therapy is a must for me.
• deleted 4y ago
  [deleted]
• Nomentatus 4y ago
  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.
  • mush_room 4y ago
    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.
    • alexmanuel27 4y ago
      Moving to somewhere sunnier is certainly something you can do, and gives you a sense of control. I believe it so much that I am doing the same.
    • Nomentatus 4y ago
• y-c-o-m-b 4y ago
  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 4y ago
    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 4y ago
    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.
    • cromd 4y ago
      Could this deficiency be caught by some kind of blood test, though? Do regular checkups screen for this? Is there some reason you'd be "super low on it in brain tissues" and not in other parts of the body?
• dmclamb 4y ago
  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.
  • mush_room 4y ago
    Thank you, all good advice. I'm surprised with how many people get diagnosed so late. Is it failure with the medical system or were your symptoms very subtle until then? Lastly, what treatment are you on and how has it helped? (If you can have a before / after distinction)
• mike128 4y ago
  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 4y ago
    Thank you, I love Gabor Maté, 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!
• parksandrec 4y ago
  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.
  • mush_room 4y ago
    Someone posted a Discourse invite link here, I suggest you (and others) add their email addresses in their profiles so that we have a possibility to follow up on this idea.
  • mush_room 4y ago
    I just reread your comment and wanted to wish you prompt success on your consulting search. And consider putting an email address in your profile so that you may be contacted should your community idea materializes. All the best
• sjezewski 4y ago
  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 4y ago
    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.
• treeman79 4y ago
  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
  • mush_room 4y ago
    Good advice. I'm going to start LDN soon. I tried it briefly years ago but didn't feel I needed it that much at the time and I was already taking many other things.
• emmelaich 4y ago
  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.aspx https://www.nslhd.health.nsw.gov.au/Services/Pages/ms-rnsh.a...
• relaunched 4y ago
  I have MS; just diagnosed in March. I've noticed a bunch of little things, over the years, that are probably MS related - and a few more after a big relapse: Foot drags every so often, mental math that was easy - isn't, forgetting things, fatigue. My advice is to take a breath and make a plan. I've started to realize that the retire at 65 plan might not be possible - so, I'm planning for a scenario where maybe I can't work in the same capacity, at 55. There's a lot that one could be depressed about - so, it's important not to get stuck in those thoughts. Happy to chat offline or it seems like a discord channel (for the group) might be in order. I'm JC Virus negative and taking Tysabri. So far, so good. It's had very good results in studies, but you have to stay JC negative
  • mush_room 4y ago
    Thank you. Could you say if Tysabri improved any of these symptoms and your age?
    • relaunched 4y ago
      I'm 38. It didn't improve any symptoms. It's supposed to lengthen the periods between attacks. I never fully recovered from the last attack, so I have a new set of symptoms I just have to live with.
• cromd 4y ago
  I found out this year that I have RIS or perhaps mild/early MS. (Most RIS cases proceed to an MS diagnosis within a few years, but there is some possibility it was some "random" one-time damage). Just a surprising result of a random MRI for something else, although I had also suspected MS before, and brought it up with doctors over a few years (always told it was just stress). Since it's rare, I guess most people who suspect MS are wrong about it, but I feel vindicated by the imaging at least. I'm not struggling much at this point in terms of function, but I've dealt with the mental struggle of thinking "that feeling just now, that was weird, was it a not-so-abnormal sensation that's part of aging? Or am I slipping a bit?". I spent a few months fretting my future. But you may take my points with a grain of salt. This thread is heavy on health advice, which is great, and I'm seeing some good tips here. I trust this forum more than many general health forums! But I'm curious if you could elaborate more on your work struggles. I worry that , as a programmer, my brain is everything, and if that goes, I'm done. Do you think your employer has noticed a drop in your performance? Have you been objectively failing at necessary projects? Have you had to take a pay cut after being laid off elsewhere? Have you had to take time off of work? This is not (entirely) me challenging your sense of worry, but also wondering how bad the symptoms can get. I have also felt a "lobotomy" or "mild dementia" state at times, but given my very early stage, I think it was partially burnout or mid-life crisis. Working a job for 5 years, staring at a screen in the same room every day, realizing your life isn't as moldable as when you were younger, it can make you feel weird! That is, there are many causes for a drop in attention and focus, and it's probably a combo of MS and other things. You said in a reply that 3 years ago, your "brain was working great", because of low stress, good finances etc. So, even if your MS is objectively getting worse, make sure to keep those other factors in mind, or you might think the MS is worsening faster than it is. I have found it difficult to read about MS because the symptoms aren't quantified like "X% of people feel this Y years after onset", it's usually just said that Y CAN happen. I've maybe seen stats about complete mobility loss. But for mental impairment it's hard to measure and report. Maybe there's degradation in memory, but how much can I expect? People tell me "oh, those things, that's just getting older", but sometimes it feels too fast. One thing that seems more objective is how often I just use a completely different word than the one I intended. This can obviously break my code, but because they're so random, it tends to break loudly and early, and I hope maybe linters/tests/compilation can save me from these simple mistakes. I think forgetfulness would be the biggest hindrance to coding. Forgetting to check inputs, forgetting to unwind a temporary hack, forgetting to warn people about things. But, one can take copious notes, keep checklists, write lots of to-do/revisit-this comments in code. And of course some tools provide more safety nets than others. So, we can try and "engineer" our way out of some things, and it's a good thing even the sharpest airplane pilots don't solely rely on their brains. I've also started independent consulting recently, spreading work between multiple clients, and maybe that format could be useful to others. While it's less stable in a way, I fret less about the drama/consequences of temporarily scaling back my hours if things get too stressful. A shorter engagement doesn't trigger stigma of inability to focus, and some time off probably won't trigger questions about resume gaps. By having clearer expectations up front about me not looking to lead teams or be some keystone member, I don't worry as much about possibly letting people down. It may also let me experiment more with companies/setups that work for me. Being in the USA, I'm also feeling good about having bought my own health insurance. Yes, it costs money, but people expect you to charge more for it, and now I don't find myself listing "health insurance would be a mess to deal with" as a reason not to leave a job. I'll be less eager to jump at a job that's not a good fit for me, just because I want insurance. Lastly, and this is for whoever, having some portion of remote work could be good. It's good for when you need to rest, but it's also good for diagnosing yourself a bit. If you're anxious about contentious face-to-face meetings, or office social pressures, it can be hard to know what is causing certain feelings. I could more easily confirm that something was off about me once I removed the stress of the office. I could say "I feel good, I feel calm, with low stress, and I still feel weird". In the office, a sudden strange feeling, noticed at the wrong time, could be interpreted by me as some kind of panic state, which feeds on itself. Now that I understand my body a bit more, I'd feel more comfortable going back into the office, because I can just ignore some feelings as routine. Getting back in the office may be a useful distraction/exercise for people who otherwise are feeling dull or dwelling on their state at home. I also have some thoughts about how I'll keep perspective, but I'll DM you with those, as that's more touchy, and my post is already quite long. But overall, I think even a programmer with some mental degradation can offer a lot to society and business. There must be so many projects in the world that would be grateful for a bit of your attention and skill, even if they're less popular or less lucrative projects.
• martin82 4y ago
  Look into keto/carnivore diet. It's a rabbit hole worth pursuing that no doctor will tell you about. Cut all carbs and all seed oils and see how you feel.
  • kksurana 4y ago
    Read this scientific research. Basically diet can help improve: https://nutritionfacts.org/2014/07/22/how-to-treat-multiple-sclerosis-with-diet/ https://nutritionfacts.org/2014/07/22/how-to-treat-multiple-...
  • mush_room 4y ago
    Believe me I've went through the entire spectrum of diets. When I first got diagnosed, the diets you would find after digging in a bit where "low-fat", and also dairy-free. I didn't stay low-fat for long, such a diet is extremely hard to stick to, and very though energy wise but also taste-wise. Going from a typical student diet of pizza and various things of the sort, to this, would have been very though. I then discovered Paleo, and then Paleo "AIP" (autoimmune Paleo). It made a tremendous difference. I followed it quite closely over the years, with moments of stumbling with various "compatible on paper" foods but not really in spirit. I was mostly symptom-free during that period wrt. to overt symptoms (I still experienced depressive states, but that I would also attribute to tweaking of the diet). Over the years I started forgetting I had to deal with this and started having chocolate, various non-gluten grains, coffee, etc., to sort of self-medicate the mental issues I was having. That didn't suit me well. Not even the coconut oil, which I later learned about why. Then a few years ago I discovered carnivore/zerocarb. But I wasn’t consistent for long and added fruit etc. Also there was a learning curve. Frankly my best period was when I was eating mostly raw ground beef and was very strict no-dairy / no-coffee / no-carbs. Subsequently as soon as I started adding even fruit, first of all I started binging on it when my emotional state was getting worse because of the lack of ketosis, and later when I had forgotten how it even felt to feel good I started with chocolate, coffee, later MCT oil, etc. As I state elsewhere here I've recently gone back on it, mostly by cutting all of the above foods. It's just evident my gut is super sensitive, and I swear i can feel it. To be clear, when I had the period where I felt really good, the feeling I felt was emanating from my gut. I thought it had something to do with gut biome (which it probably did), but moreso I think it's because it fixes "leaky gut" (I know, it's "alternative" but there is research on this). Anyway, thank you for suggesting it. I've avoided going into this too much in comments because it's always quite controversial, but it's what I'm putting my faith in, from experience. I actually like veggies, would love a salad sometimes… I would like to have some, but they do seem to be non-optimal for some with very sensitive guts.