What is living with multiple sclerosis like?

My girlfriend is worried she has it (family history). She does hit all the risk factors, so it’s more than possible she does. She’s 43, and has never had any major symptoms until recently What are the best and worse possible outcomes? I looked it up online, but everything is really vague; apparently, ANYTHING can happen.

Pretty much how I understand it, too. My SIL has it. I would describe her life as chaotic. She never knows how she’ll be, one week to the next. She’s cancelled many trips and outings because of her MS symptoms. I suggest get a diagnosis and start treatment asap. IMO.

Does your SIL follow her treatment fully?

I think the only answer is, it depends. My wife’s stepsister was diagnosed with ms and the only symptom she had was a numb spot on one cheek. She had a full life (she was a dentist) retired to Florida and died in her 80s. I know another woman who has had two bouts of hemiplegia which left her her confined to bed for a week or two and since has apparently recovered completely. And I knew a man who had a weakness in one leg most of his adult life and in his 60s, he got involved in sculling as the cox.

On the other hand, I knew one man who went from diagnosis to death in about three years. I think that was unusually fast.

I wonder if this is all really the same disease, or just the same symptoms, but they all got doctor’s diagnoses of ms.

That’s the thing MS is a bunch of symptoms and affects people differently. My SIL has, AFAIK, followed her Doctors (plural) advice. She does enjoy good days and has a full life. She just needs help sometimes.

And those symptoms can be contradictory: both diarrhea and constipation are in the list.

It varies a lot with the patient. I officially Do Not Have MS: I have MS-like symptoms but the less-invasive test is negative and, since my triggers are pretty clear and relatively easy to manage (1), the recommendation from the neurologist was “so long as you can manage it by managing the stress, let’s just do that.” There are some medications which may or may not be helpful, but it’s still a “may or may not” and the kind of thing where it’s difficult to even get analyzable results: is this person better because of the pills, or because they’ve been able to avoid their triggers?

Apparently a lot of the symptoms which I consider relatively bad are similar to the early stages of drunkenness: problems with language (both comprehension and expression), visual disconnects (“the world moves”). I used to, whenever I felt kind of sick, weather it as discreetely as possible; I’ve learned to avoid doing that. Can’t expect people to understand “I’m… feel… iiiiin… like I got run over by a… very… heavy… tru-uuuuuck” if I’ve just managed to breezely smile my way through three meetings; at the very least I need to warn a coworker in advance that I’m starting to feel sick and I may be able to get through the meetings just fine but I’m not making promises. And if I’ve got the shakes, I’ll show people: I won’t show the client (unless we’re already that buddy-buddy) but I do need to show my team. They shouldn’t think I’m fine when I’m not. And as for family, the key line is “blankie on sofa day, sorry”.

1: for some values of relatively easy. One of my worst triggers is “idiot boss”; most people can’t change that as easily as I can, but I happen to be a contractor. If the boss makes me sick I change gigs. Other triggers include radical temperature changes: 18ºC office vs 40ºC exterior is Not Good.

I don’t know much (my SIL was recently diagnosed) but I do know there are (in broad brush terms) a couple of different types of MS, and this will affect outcomes significantly.

If you have Relapsing MS, then you can get bouts of symptoms which can then fade or disappear for periods - Relapsing MS seems to have better long terms outcomes. Whereas Progressive MS means the symptoms build over time and don’t go away. This isn’t the kind you want. Sadly this is what my SIL has, and she has gone down hill fairly quickly in the last 18 months, which significant impact on her motability and sense of balance.

On a positive note, I read recently that there’s been some significant breakthroughs in stem cell research which seems to halt the progress of some kinds of MS.

Relapsing MS is also called “Classic MS”; some of the older references specially are likely to call it Classic.

As you mentioned and other people have repeated the effects are variable and unpredictable so it is challenging to say what it is like.

My father had the relapsing-remitting MS type, he had a good quality of life and even without the modern advances in medication like Beta Interferon, survived for almost 30 years after diagnosis. In today’s world where they are far better at minimizing mylan damage I would expect he would have survived longer. With the understanding that I am not minimizing the effects my father had extremely rare central pain syndrome but still truly enjoyed life.

That pain was from mylan damage from an attack and from a post it appears that there is a concern but there is not a diagnosis. If she thinks she may have the MS it is important to seek a diagnosis and testing now as that cumulative damage will happen faster and with greater intensity without preventative care or care during an attack.

Without a diagnosis one does not know if it is the relapsing-remitting, primary-progressive, or secondary-progressive type…and those are only the most common types.

With today’s modern treatment life expectancy is a bit shorter but typically it is not a death sentence. While I can relate to the fear of not knowing what may be happen, as you are a loved one I would highly encourage you to help her not focus on the worst case scenario.

Speaking directly to you Lizard, none of us can truly understand what it is like to go through this and cannot imagine what having foreknowledge of what may lead to your final demise does to a person. I have seen what happens when people define their loved ones or themselves by a degenerative disease and it can be worse than the suffering from that condition.

It is extremely important for you to:

  1. Start learning about practicing self-care for yourself now. It is counter intuitive but this is critical and not selfish.
  2. Focus on what is important in life for both of you and do it. Prioritizing what is important for you and doing it now vs planing to do it later can be a positive part of a very unfortunate event.
  3. Do not treat a disease as a disabling. It is easy to unintentionally dehumanize a loved ones even with the best of intentions.
  4. Check that you aren’t dealing with your own discomfort with death or goodbyes.
  5. The big don’t: don’t offer advice unless it is explicitly asked for. But do reach out if #1 isn’t a problem

Breaking rule #5 above.

Don’t focus on this being a long good bye, turn your focus on making the best of whatever time is left.

Spelling correction myelin not mylan.

Myelin sheath damage is what causes the long term effects with MS. As what nerves will be effected by the scar tissue for this protective covering over the nerves it is almost impossible to predict what the effects will be. It simply just depends on which nerves the scar tissue develops after an attack.

Relapsing-remitting or RRMS.


This thread is probably better suited for IMHO, both because it appears to be seeking anecdotes rather than data, and because we prefer to keep medical advice there to emphasize that we’re not doctors. Moving.

Many thanks to all who have responded so far. This is helpful.

I have heard, from an unreliable and non-scientific source, that MS is purely a consequence of stress. That is obvious bullshit, BUT I expect there’s a grain of truth in it. Stress is clearly not the single cause, but it seems quite likely that in some ways it’s a contributing factor. Psychological issues and physical issues are all intertwined somehow, and can’t successfully be separated. So taking care of your emotional and mental well-being is part of MS treatment.

A dear friend of mine was diagnosed with MS about two years ago. I’m not sure if she has Relapsing or Progressing MS – I do now that she has periods in which her symptoms are fairly minimal, and then has flare-up periods which can last hours or days. Her symptoms include fingers that get numb (making it hard to type or do other tasks requiring manual dexterity), as well as affecting her steadiness on her feet while standing or walking. A bad flare-up leaves her essentially bedridden.

I do know that her symptoms progressed fairly rapidly over the first six months or so after she was diagnosed – and that was highly concerning to both her and her doctor – but a change of doctors (and treatment regimens) made a big difference for her.

And, as others have noted, stress is a big trigger for her symptoms. She works a late-night shift job (with some very stupid co-workers), she has a toddler son who was recently diagnosed with autism, and she has suffered from depression – she’s learned that any and all of the above (as well as big weather changes) can correlate with one of her flare-ups occurring.

Note that in medical terms, “stress” isn’t only psychological: it can also be physical (my sudden temperature changes, for example). Different people have different stressors or triggers, so one of the things to do for each patient is to figure out their own.

Someone with Primary Progressive MS here - which means my deterioration is somewhat constant but very, very slow (hopefully decades long). My mother also has MS.
Although I am PP, my MS life is full of little, seemingly random little “storms” of symptoms, usually lasting from a few hours to a few days. Right now I’m writing this at 4:00 a.m. because a nerve pain (like being poked by a dozen pins at random times, mostly in my feet) and itching "storm"woke me up and wouldn’t let me go back to sleep.
My constant symptom - the one that doesn’t go away - loss of functioning on my right side. I cannot lift my right leg more than 2 or 2 1/2 inches of the ground and I cannot touch my thumb and pinkie or second finger on my right hand together.
Other than that, its a crapshoot - some times I get massive charlie horses, which usually go away in a few minutes. I get fatigued occasionally, that lasts until I go to sleep - like I’m living in double gravity or my body to sooo hard to make move. I have a set of a few days in a row with sudden “need to urinate right now” moments. (One of God’s jokes is giving this symptom to someone who cannot move very quickly).
About once every 6 weeks, I cannot sleep for about 3 days. Interestingly, I am never fatigued or unfocused - I actually get a lot done during these times. It’s followed by about 2 days when I just can’t sleep enough.
There are a ton of pills - trying to address every symptom. When I was first diagnosed (which is a long story) my primary MS drug was a shot (Rebif) I gave myself 3x a week - it caused me to have a fever and fatigue with every dose for a few hours (so I took it before bedtime and try to sleep through the symptoms). Now I am on a drug (Ocrelizumab) which I take in an infusion center every six months - the infusion takes 5 or 6 hours.
All this sounds scarier than it is - the first few months were very scary, but I had the advantage of having lived with symptoms for years and watching my Mom for decades as well. I can still work in a mentally demanding field between 60 and 80 hours a week with few accommodations.
I am happy to answer any questions.

How old are you?
Do you know how typical your symptoms/experience is?
Are there any support organizations worth joining?