Experiences with MS or other chronic illnesses

August 19, 2018 6:45 PM

It's likely that I have M.S. and I'm freaking out. I'm looking for personal stories from people who have it or have had experiences with it (significant other, family member) and how it's affected your life.

I'm totally aware that MS is a very individual disease and there's nothing I can do to really predict how it's going to affect me. But I have so many worries and the internet has not been a particularly comforting place thus far. I've been to /r/MultipleSclerosis and it wasn't particularly reassuring - a lot of it is people venting about their current flare-ups and my anxiety just ramped up more reading about all of the different symptoms I could potentially deal with in the future. Especially because they come on so suddenly. My current set of symptoms has been extremely mild so I haven't had to adjust my life immensely yet.

I'm finishing up a PhD soon and was hoping to do a career pivot (into data science) afterward. I'm registered in an intensive data science course load starting in January and I'm especially worried I won't be able to complete it. I'm worried about my finances as I'm obviously a very poor grad student right now and wouldn't be able to deal with not working. I'm worried this is going to become an overwhelming financial and emotional burden for my (currently very patient and loving) partner. Luckily I am in Canada so I think the treatments will at least be partially covered, but I can imagine it's still a fairly expensive disease to deal with.

I guess it might just help to hear how it's impacted your life and how you've adapted to it. How do people deal with overwhelming fatigue when they have to work? How do people deal with managing their relationships, or temporarily losing their eyesight, or being at a literal loss for words? A lot of MS resources say people eventually learn to live with and manage the disease and go on to live very productive, satisfying lives - but how, exactly?

I understand that MS is not very common, so if you have any experience in terms of chronic illness that would also be helpful. Anything would be helpful right now. Thank you all.

posted by thebots to Health & Fitness (27 answers total)

Have you actually been diagnosed with MS or do you have spinal inflammation and lesion(s) and is your doctor saying that the torso numbness can be a sign of MS and you're now on "watch" for it? If it's the latter, PM me, I have experience with that.
posted by vivzan at 7:17 PM on August 19, 2018

Best answer: I had a housemate who was diagnosed while she was completing college. A significant facial muscular numbness caused her to go see a doctor and she was diagnosed then.

She had regular medication that got shipped chilled, and we knew what to do if we found her non-responsive. That never happened, she completed her degree, went on to get a job in her field and got married to her boyfriend.

By all means, get an actual diagnosis and get on a plan if it turns out to be the case. Reddit and Google are not doctors.
posted by nickggully at 7:21 PM on August 19, 2018 [4 favorites]

I know quite a few academics with MS who prefer the flexibility of academia to industry. Let me know if you want me to put you in touch.
posted by k8t at 7:30 PM on August 19, 2018

Best answer: IANAD and I don't have MS, but I do have anxiety and a chronic illness which may eventually leave me severely debilitated. I find that the internet is good for information on particular adaptations or lifestyle changes I can make and not much else. The echo chamber of everyone's anxieties makes me an absolute wreck. You live a satisfying life by doing it. Face the limitations you have right now head-on and work on accepting them without judgment, and do what you can to make things easier on future you in terms of housing, workspace, etc. It's possible you won't be able to complete that intensive, but that's no reason to not go into it excited to learn and grow. It will teach you a lot about how to get things done while managing your condition.

Also, you're finishing a PhD so you probably have access to counseling through the school, at least for a bit longer. So you know what I'm gonna say...therapy. It has been a big help as I make peace with the facts of my condition, including its effect on my career. Hugs to you; I know this is a lot to take in right now.
posted by hollyholly at 7:39 PM on August 19, 2018

Response by poster: Just to clarify: I'm now "on watch" (as per my neurologist) as I also have Lhermitte's sign, tingling right leg and very very mild optic neuritis. Basically all signs are pointing to MS but there hasn't been a spinal tap yet.
posted by thebots at 7:39 PM on August 19, 2018

The good news is that medications have improved a lot lately. Someone close to me was diagnosed almost 30 years ago. You would never know unless they told you. One piece of advice is not to be shy or embarrassed about having a disability that may well be invisible. Get a disabled placard for your car, for example. If you are feeling very fatigued it can make a huge difference. Beyond that it is really so hard to say because the disease is so variable. Hang in there!
posted by karbonokapi at 7:51 PM on August 19, 2018

Best answer: I have a friend in Canada with MS and her experience and the impact on her life has been night and day compared to the people I know in the US. Basically her only worry is staying healthy so she can achieve her goals in life, and the Canadian system has assigned her to an MS office for life, basically, and she is quite happy with the care and doing well. They are careful but willing to be innovative. They are not using her as a guinea pig. She ran a half marathon last week. She is doing much better now that she is getting treatment so I think you can expect that to start to happen. The integrated care and lack of stress over finances has made her disease progress slower and be less harmful to her life than anyone I know in the US. So I'd stay stay in Canada, try to get in with one of the bigger medical centers and plan to stay with them.

A lot of what impacts care in the US and some other places is the constant need to manage disease. And the constant changes in doctors and medicine that come with private insurance. And finally, people over doing it because they are so desperate not to lose their jobs. A lot of what you see online is people having huge trouble managing all that. If you can avoid all that I think you will have a much better outlook. There is exciting research in auto immune diseases and you are young. Hopefully there will be a cure soon enough to benefit you greatly!
posted by fshgrl at 7:59 PM on August 19, 2018 [7 favorites]

Best answer: Hi!

I was diagnosed with MS back in 2011. I'm in Canada, first signs were almost exactly the same as yours. And for the most part, I am as independent and active as back then. Yes I have symptoms but they are manageable but yeah it sucks. Like you, when I was first waiting on the diagnosis, I worried so much that I would lose my independence, become disabled, have to centre my life around the MS.

But I have been pretty stable, with a couple of flare ups since then. The MS is always present but not necessarily a defining element in my life. Yes, I worry about getting another attack, I worry about not always healing completely from each one too. But do you leave your house worried about getting hit by a car everyday? Yes, it could happen, but you can't live your life that way.

Almost all the treatments are covered by either provincial drug plans or group plans at work. There is some paperwork to jump through and yes they will still cost you a bit (just be thankful you are in Canada). You will most likely need to take routine blood tests depending on the DMT (disease managing treatment) and MRIs but a lot of us just keep trucking along. Disability is possible but you always hope a long way from now, and maybe even that they will find a cure before then.

There are many support groups here given that Canada has the highest rate of MS in the world. Wait to see for sure, and talk to your neurologist or check with the MS Society of Canada for chapters near you.

Feel free to me-mail me.
posted by mephisjo at 8:07 PM on August 19, 2018 [6 favorites]

And if you are going through your first MS attack, what they call a CIS (clinically isolated syndrome) leading to a potential diagnosis, they may put you on steroids. This will most likely stop the inflammation and bring you back to "normal" after a few weeks. And for future flare ups as well. You may be out of commission for a couple of weeks but for the most part you heal.

I found the wikipedia page very useful (but it has gotten very long over the years).
https://en.wikipedia.org/wiki/Multiple_sclerosis

Fatigue is an issue, but I have been able to work full-time outside of the 2-3 attacks I have had which made me take 2-3 weeks off from work. And the fatigue is something you will need to manage, but it varies so much between people and even times of the year (stress, temperature).
posted by mephisjo at 8:17 PM on August 19, 2018

Don't have MS but do have other chronic conditions for which I too have fallen into the hole of internet forum anxiety and hopelessness with no bottom and my advice is what hollyholly said above. Really, not enough people can give you that advice. Nobody posts when they're just living their lives, doing fine. I come back to this Ask comment a lot.
posted by colorblock sock at 10:07 PM on August 19, 2018

My Mom had MS. It really does vary widely from person to person. Another individual’s experience won’t be yours. The new drugs are highly effective and can maintain remission for long periods. Memail me if you want more info; I’m hopeful this will be manageable for you, but you may want to prioritize things you want to do now which could be difficult later if things change.
posted by OneSmartMonkey at 11:54 PM on August 19, 2018

Even if you’re diagnosed, all hope is not lost! Check out the work of Dr. Terry Wahls, who ended up wheelchair-bound after her diagnosis—she’s pioneered a lifestyle approach largely based on a Paleo diet and is out of the wheelchair and moving with ease these days and has even been conducting trials based on her Wahls Protocol. Her website has links to watch her TedX talk and check out her book. Best of luck to you!
posted by trampoliningisfun at 12:28 AM on August 20, 2018

Best answer: I don't have MS, but I do have an autoimmune disease. Sending you good vibes — an autoimmune disease diagnosis can be terrifying, especially in one's '20s.

I tend to stay away from online support and discussion forums because of the "echo chamber of anxiety" effect others have mentioned. Try to remember that people who tend to be engaged in online forums, discussion, illness blogging etc. are people whose conditions ended up impacting their lives a lot. People who have minimal symptoms don't tend to get involved as much. So the impression of illness progression you get online can be (unrealistically) skewed towards the severe/negative end of the spectrum.

I know this is hard to do, but my #1 advice would be: don't pre-worry about things! Like you said, MS is very individual, and it's impossible to say what your trajectory will be, what symptoms you'll have, etc. It's good to get the "big picture" life planning in: stay in Canada for the health care, possibly look at a flexible career, connect with friends and family who are caring and sympathetic, etc. But other than that, I would deal with individual symptoms and problems as they arise, instead of endlessly researching and constantly thinking, "what if it gets really bad and I have to _____?" It can lead to a lot of unnecessary catastrophization about things that may never happen. (I say this because I definitely fell down that particular rabbit hole for a decade. Some of the terrible things I dreaded did happen, and, well, it was terrible, and I coped. On the other hand, some didn't, and I wish I could get back all the time I spent worrying about them.)

I won't lie, chronic illness is very tough, and you will probably have to adjust your life and expectations several times as things go along. But I know a lot of chronically ill folks who are living good lives right now, despite severe symptoms (myself included). Feel free to Memail me if you ever need a listening ear!
posted by fire, water, earth, air at 12:30 AM on August 20, 2018 [4 favorites]

The first episode of Creating Your Own Path podcast interviews a woman who has MS and she talks about a lot of this stuff.

Probably not hugely useful, but a friend of mine from elementary school's mom has MS. We lost touch long ago, but my mom ran into her mom at a conference while ago and in her forties was divorced (he was awful, so yay), in a wheelchair, and had just finished her Ph.D as a single mom.
posted by jrobin276 at 12:32 AM on August 20, 2018

Also: you might be interested in the blog, Twitter, or novels of writer Nicola Griffith, who's had MS for a decade or two. She's gathered quite a big disabled community around her, and her blog posts about MS are a reassuring look into how someone can live and thrive despite illness progression. Recently she wrote a novel about the early days of a woman's MS diagnosis — it's called So Lucky.
posted by fire, water, earth, air at 12:36 AM on August 20, 2018

I have a friend who I met through karate - she got diagnosed with MS around or a little before 30, and had significant symptoms, but also completed her second-degree black belt and went back to grad school and got her MSW. She moved away, but last I heard she was still training and doing very well in her life and career.
posted by restless_nomad at 5:52 AM on August 20, 2018

I can't really add much beyond what the other MS folk here have said, but in terms of life impact my mother was diagnosed with MS about a decade ago now and her hobby is driving around Australia camping in remote locations. By herself. As others have said treatment, especially somewhere with a robust public health system, is very effective and can help mitigate the impact MS has on your life.
posted by Jilder at 6:40 AM on August 20, 2018

I've known several people with MS and it can be a very individualistic thing. One person, now in her late 70s, has lived with the disease since she was in her 30's. She's lived on her own for most of that time (in a relatively small town) and had a normal career in the Arts (with some accommodations) for most of that. As she's gotten older and retired she's had to have a bit more help, as she now can no longer walk though she can move, and she's taken advantage of community supports. She has found diet, positive attitude and some exercise to be helpful for her. The other person I know is largely infirm. She's younger, in her late 40's, and is nearly immobile. She relies on the help of her family a lot. She also had the so-called Liberation Therapy which was largely ineffective for her. From both cases, preparing yourself and your love ones for what might be coming would be in your best interests. So it is possible to keep living your life and career if you plan accordingly.

BTW, Canada has some of the highest rates of MS in the world so there are a lot of supports here and thankfully we have a public health care system. Good luck and you have my deepest sympathies.
posted by Ashwagandha at 8:40 AM on August 20, 2018

I have multiple chronic neuralgias and for me it's been far more useful and helpful to engage with others in the same boat on an individual basis rather than via specialized forums or groups or whatever, because the latter is exhausting and full of a lot of weird fringe woo shit that is awkward at best and predatory at worst.
posted by poffin boffin at 8:47 AM on August 20, 2018

Best answer: From a user who would prefer to remain anonymous:

I have relapsing-remitting MS. I am not posting this from my profile because my profile is connected to my name. My mother does not know* and I would not want her to find out via MetaFilter.

*(it’s complicated, but it also gives you an idea of how non-evident it is)

This is all predicated upon your having MS. You say it’s likely but not certain. Don’t get ahead of yourself.

• Your impression of MS is probably out of date. It is almost certainly worse than reality. Mine certainly was. I mean, fair enough. What reason did we ever have before to update our impressions of MS? None. So, holy hell, when I found out I was terrified and extremely anxious. I have been there.
• Your impression of MS is probably based on people whose symptoms are visible at a glance. What you don’t include in your image of MS is all the people who have it but that you don’t even realize have it.
• I go to the gym three times a week, just like I (mostly) did before the MS. When I finish a workout, do you know how amazing I feel? WAY better than before because I look around the gym and think, “Holy crap! Do y’all have MS? Because I do and I just did this thing!”
• Because my endurance isn’t amazing and my balance sucks, I worked with a kinesiologist who specializes in people whose brains aren’t quite normal. This was tremendously helpful because she pointed out things about my gait and posture that I hadn’t realized. She also tailored a workout plan to me. The trainer dudes at the gym were nice enough, but this was beyond them. So seek this out if you’re interested.
• Therapy. Hahaha. MetaFilter, always with the therapy, amirite? I found a guy who specializes in cognative-behavioral therapy and, as luck would have it, works with students with disabilities at a major university. He was tremendously helpful. This workbook was also helpful, even though I went into it with an eye-rolling attitude because I thought I was probably smarter than the book.
• I learned two things in therapy: There are a TON of coping skills that are just, like, life/brain hacks that EVERYONE should know whether they have MS or not. I had basically been skating by in life with average coping skills but then this thing happened and I needed to up my game. So I did. It took three or four months. Those were the good realizations. Bad realization: I was pretty ablist. Not proud of that, but there it is. On some level, I looked at having ANY sort of disability as the worst thing ever. It is not. It is just not.
• 20 years ago, there were few if any treatments for MS. Then there were injectables. Now there are pills.
• Canada! This has come up before, but wow, Canada. I don’t know which province you’re in, but let me just say that as someone from elsewhere who moved to Canada, it has provided me even more reasons to be grateful that I live here. In my province, the drugs are covered. I have a nurse I can email who responds within 24 hours. I have a specialist who does not bill me. I think you know that your situation would be worse if you weren’t in Canada, but wow. Canada.
• Be judicious in your reading. In general, I like to read alls of the things. For MS, not so much. I’ve looked at the MS society’s website and maybe one or two other official-ish sites to help evaluate treatment options and other practical things. I don’t delve into sites where people are bemoaning their lot in life or even describing their situation. It’s just not helpful for me. It is not selfish to not seek out other strangers’ sad stories. It’s actually quite healthy. I mean, yes, if a friend has difficulty you want to listen. And maybe it’s therapeutic for those people to get their stories out there. But do YOU have to read them? No, you do not. So don’t.
• MS has encouraged me to live more for today. If you have MS, some things in life are uncertain. Oh, you know who else has uncertainty in life? LITERALLY EVERYONE. Whether they realize it or not. You now realize it. Embrace that.

posted by jessamyn at 9:22 AM on August 20, 2018 [4 favorites]

Response by poster: You all are amazing. Thank you so much. I'm going to stay off forums and just read this thread whenever I'm feeling anxious. I'm going to look into therapy at my university also. Thanks again.
posted by thebots at 9:45 AM on August 20, 2018 [3 favorites]

Best answer: You say you might have MS so I hope you have the pleasure of chucking all this in the trash.

My wife is twenty five years into a diagnosis. She is the breadwinner for our family of two adults, two kids and four cats. She uses a wheelchair, swims and works out five days a week, and is indubitably the most competent biped in our house. This is what I've learned during our twenty year relationship:

Get advice about revealing your disease to to potential employers. They may be forbidden to overtly discriminate but they will act on unconcsious prejudices. It's probably better to say nothing.

You have a lot of reasons to be worried and a lot to be optimistic. MS research is progressing. There are many new and old drugs available. There used to be none. Find the ones that work for you.

Be physically active now. Relapses will be less problematic and the habit of exercise will stand you in good stead if movement becomes more difficult. It's easier to do more of what you've always done than to launch into a new physical program when things are hard.

Be physically active always. Bad days happen. Relapses happen. But movement always comes back and always helps.

For what it's worth, the changes that MS brings to your life are mostly gradual so it's a matter of slow adaptation rather than finding solutions to sudden problems. It becomes one focus of your life, not the only one; there's plenty of room for cats and kids and work and friends and being disgusted by the state of the world.

Be sympathetic to your partner and try to work out between yourselves when you both need help and respite. It's easy to convince yourselves that because you are the best at dealing with this that there is no such thing as help.

Best of luck.
posted by firstdrop at 10:45 AM on August 20, 2018 [1 favorite]

I don't have MS, but it was one of the possible diagnoses. I am now receiving treatments for CIDP.

However, I did a lot of reading about MS, and the information I found was a lot more optimistic than what you have seen. People live and live well for years and decades after their diagnosis. There are pretty significant lifestyle changes, but lots of people continue to work and support themselves. Treatments have come a long way, and being in Canada should go a long way toward surviving and thriving with the condition.

A friend of mine goes to yoga classes with a lady who was diagnosed with MS more than 20 years ago.
posted by Billiken at 12:33 PM on August 20, 2018

Best answer: I’ve had MS for thirty years. My disease was more active when I was younger - bigger swings in symptoms than now. I stopped working after a time and did volunteer work for years. I had an excellent LTD insurance plan so money wasn’t a huge issue for me. That plan just ended when I turned 65. I have returned to part time work. Never thought that would happen. I am doing fine at 20 hours a week and have chosen a career that doesn’t involve much physical activity. I’m saving my physical activity energy for life instead of a job.

Like others have said, MS is very individual, but the thing to remember is that the majority of people do not become disabled by it largely due to the medications that have been developed. The sooner you start them the better. If one doesn’t work you try another. I have been on three different ones over the years plus steroids. You may go years between flare ups. There is much to be hopeful about once you get over the shock of the diagnoses. Be patient with yourself and your neurologist, get help if you need it, and live your life.

I’m waiting for an inflatable kayak to arrive so I can take my 68 and 56 year old sisters kayaking for the first time. It’s a first for them, I have been kayaking and rafting for 35 years.
posted by cairnoflore at 5:19 PM on August 20, 2018

Best answer: I was diagnosed 16 years ago. The first couple of years were a blur of panic, unexpected divorce, and a terrifying new vocabulary of all the ways in which my body might fail me. It sucked SO MUCH and I have an enormous amount of empathy for the place you're in right now. Please be kind to yourself--you're scared because this is scary shit! It's OK to be afraid of frightening things.

The panic does subside and the new vocabulary starts to be less terrifying and eventually the whole thing gets integrated into the rest of your life rather than taking it over entirely.

To address your question of how, exactly, people manage the disease... I compare it to the hardest thing I've ever seen anyone do, which is parent a three-year-old. I see parents handling things like temper tantrums with kindness and grace and I think to myself, "Holy crap, that looks SO incredibly difficult, I would never ever be able to do that." Which, if someone just handed me a toddler out of the blue, is probably true. I'd be screwed.

What I tend to forget is that those parents didn't just have that toddler handed to them out of the blue. They've had a couple of years of getting to know them and developing a relationship with them. They have insight into their child and his or her behavior, and they know how to manage the tantrums thanks to that insight. What's more, they love that screaming, irrational tantrum-throwing maniac enormously.

Over the next couple of years of living with MS, you're going to develop a relationship with it. You're going to have insight into its behavior, and you're going to know what makes it better and what makes it worse. You'll love your body, demyelinating tantrums notwithstanding, and thanks to that love and insight, you'll know how manage. You really will.
posted by jesourie at 11:59 PM on August 20, 2018 [3 favorites]

Oh, and next weekend I'm going on a 30+ mile off-trail backpacking trip during which I'll summit five of the six named peaks in the Trinity Alps. All five will require some Class III scrambling to get there. Even after 16 years, If I didn't tell you I had MS, you would never know.
posted by jesourie at 9:42 AM on August 21, 2018 [1 favorite]

Best answer: I was diagnosed with relapsing-remitting MS just over two years ago when I had optic neuritis (and had a real-time AskMe about it). I had several days of major freak-out, and what helped the most was that I already had a friend and an acquaintance with MS. The acquaintance seemed really barely affected by it at all, which was encouraging, and the friend was often really badly affected, which was encouraging in a different way -- she is a totally kick-ass person, and yes sometimes she uses a wheelchair or scooter and yes sometimes she wakes up blind or her arm doesn't work, but she's funny and sarcastic and she has an amazing eight-year-old and a brilliant and sarcastic husband and they just all make it work. She was one of the first people I told about the diagnosis and it was pretty damned impossible to be all "Woe is me! I have MS! My life is over!" given that she also has MS and her life was obviously not over.

Since the diagnosis, MS has brought other people into my life, because it was a bit of a wake-up call in realizing how socially isolated I was. Which started out as a thought of, "Oh, shit, I live alone, what happens if I do wake up blind one morning? Who the hell's going to help me?" and then matured into a less-transactional realization that having good people in one's life is good. I joined a UU church, I started hanging out with jesourie when she reached out after my own AskMe question and we discovered we lived near each other, I put more effort into identifying relationships I wanted to strengthen and a couple of those have grown into good friendships. I'm very, very grateful to my MS for that.

I spent a couple months dealing with all the annoying unsolicited advice (try this diet! take probiotics! here's some weird-ass protocol that helped me!) and kind-but-irrelevant articles about primary-progressive MS forwarded by relatives. I realized that some of the weird advice is because relapsing-remitting MS does remit, so people start thinking that whatever they did right before the relapse stops must have been what stopped the relapse. That realization helped me stop feeling the need to keep gathering info.

I also spent a couple months fighting with my insurance company to cover the medications my doctor had prescribed, and I'm assuming you'll get to skip that step since you're not in the US. Once I was able to start the meds, I started feeling so much better. I'm not sure if it was the MS meds or the Vitamin D she also recommended, but I hadn't realized how absolutely fatigued I had already been, and that fatigue went away. I had a few months of mild and expected side effects with the medications, and since then, I've been fine. No symptoms, no new lesions, no relapses. I take a pill and some vitamin D every morning, I get an MRI once a year, I was seeing the neurologist twice a year but they bumped me down to once a year because the appointments were basically, "Your MRI looks fine. No new symptoms? Any questions? OK, you're good to go."

I'm fully aware that things might change, but for now, weirdly, MS has brought only good things into my life.
posted by lazuli at 6:40 AM on August 22, 2018 [3 favorites]