I’d just like to hear any experiences from those who have MS or know someone who does.
My sister was recently diagnosed with MS and she’s 31, healthy otherwise.
What challenges should she expect? I’m pretty new to posting but I think I’m supposed to state that I realize that you’re not doctors and I’m not seeking medical advice. She has doctors and even posted a “selfie” of her MRI to Facebook recently.
I just want to know what to expect. I did work at a summer camp for people with physical disabilities for a number of years and met people with MS.
In general, they were upbeat but the disease just seems to be a cruel outcome for those affected. By that I mean if you have a condition that you are born with, that way of life is all that you know (I’m assuming). But to be an adult and be diagnosed with MS, especially when you have a family and/or kids that rely on you…just can’t imagine.
I have a friend who was diagnosed with MS over a decade ago.
It doesn’t seem to have slowed him down very much, so I think the long-term outlook can be pretty good.
I have MS. I was diagnosed at 40 - 19 years ago. The most important idea I could impart is that everyone’s MS experience is different. The symptoms can be so different person to person, you could believe they are different diseases. For example: some people suffer significant mobility issues, others can have cognitive, sensory problems, or debilitating fatigue. I have a theory on that, but I’ll spare you that here :D.
She may be having trouble coming to terms with a scary diagnosis. For that I would highly recommend one of the message boards affiliated with the MS Society or one of the bigger hospitals.
MS is not a death sentence. I work full time and other than a couple of severe exacerbations, I don’t require time off or accommodation. It’s really important that she paces herself with respect to her energy levels.
To support her I think you could learn about the disease - again read the reputable bigger hospital sites. She’ll have received a diagnosis that breaks down the neurologist’s view of her disease progression: relapse/remitting, secondary progressive or primary progressive.
I wish her the best and I commend you for your concern and caring.
For those of you with Relapsing-Remitting MS, what are your remission phases like? Do you literally go months/years with no symptoms, or do you just see symptoms decline in intensity for a set period? does anything work to extend the remission periods, or does anything set off a relapse?
There are whole books on MS that you could find in the library. I read several when it was suspected that I might have MS. (Turns out I don’t have MS at all.)
Not only can the symptoms be wildly different from one patient to another, but separate episodes in one patient can product totally different symptoms from one episode to the next.
This happens because MS causes scars on the nerve fibers in the brain, interfering with nerve transmissions along the specific affected fiber. So the symptom depends on just which nerve happens to get scarred.
Early stage MS tends to be mild and remitting because the scars are minor and heal up, leaving only a minimal scar behind. As the disorder progresses, the scars become more serious and more permanent. This is when the symptoms become more several and less remitting.
There are a variety of (suspected) auto-immune and degenerative neurological disorders. By all accounts I’ve read, MS is generally one of the less gruesome and less debilitating of them. Something like Parkinson’s Disease is more debilitating, and Mad Cow Disease is gruesome in the extreme.
ETA: P.S.: “Sclerosis” means “stiffening of a structure”, which is also means scarring. The same root is seen in “sclera”, the stiff cartilagenous structure commonly known as the white of the eye.
I’m relapse/remitting. The damage done by an exacerbation remains to a large extent, so the symptoms don’t remit, but the disease progression can. I can go awhile between exacerbations but things like stress can push me in the direction if I’m run down. I have regular MRIs and they often show new lesions - it varies whether I feel those effects.
I was on a course of Interferons but stopped in 2004. I know much of the disease modifying medications have changed, but I’ve decided for now to only treat symptoms. Some people have had success with various medications, but sadly many of them cause their own issues (they thought I’d developed drug-induced Lupus, so stopped the Interferon).
Be careful where you get your information. The tendency of MS to go into remission makes it really easy for people to convince themselves that they’ve found a cure. Add that to the fact that most preliminary research does not result in a usable treatment, no matter how promising it seems or how much publicity it gets, and you get wave after wave of suppliments and ‘cures’, all claiming to be supported by the latest science.
My sister has had MS for about thirty years. I say about because until her symptoms got significant enough, she didn’t mention it to us out of state relatives. She likes to keep up with the literature and has a couple of forums she visits. I’m very glad she’s sensible about sorting through it all. It would be really hard if she was spending money she didn’t have on unsupported ‘cures’.
My brother has late-onset MS - he didn’t have symptoms until he was in his 50s. When it comes on late, the symptoms tend to be much milder. He uses a cane or a walking stick, and rides a recumbent trike.
That is excellent advice, Yllaria, many well-intentioned people will suggest any number of magical cures. To-date there is no cure. Traditional western medicine has a better handle on research but there are plenty of failed medications here too.
My aunt was diagnosed with MS I think in her early 50s. She kept working for a long while but now that she’s just around 60 she can barely walk. Her arms are fine and I am pretty sure she needs to be in a wheelchair full time (I saw her a few weeks ago and she has to lift her legs into the car and stuff) but her home is 100% not wheelchair-accessible. She does, thank god, have a stair chair (well, two - yay for split level homes). She does the best she can with a walker.
She would be much better off and better able to live with MS if she could only live in the right sort of house (stair-less, hill-less, clutter-less), in a wheel chair so she could move better and if she was able to figure out how to get transportation. My uncle is still around but he’s too sick to leave the house hardly anymore.
She is fatigued but I’m told that’s due to her meds. Or she was on meds to keep her awake but she’s off them now.
Her mind is still 100% there, of course, and she’s got a good attitude. She just is in a bad place…literally
I’ve known several people who have been diagnosed with MS and the outcomes have been so different you wonder if it is one disease.
A friend in her seventies had two episodes of stay-in-bed paralysis a couple decades ago that lasted for a couple weeks and then went away. She leads an extremely active life even in her 70s and has had no further problems.
Another friend was diagnosed in his 20s, was a little halt, but never got worse than that and now must be about 80. Until recently he was involved in boat racing–albeit as a coxswain.
My sister-in-law who died in her late 80s had just one episode–and it involved a numb cheek. She died with the numb cheek and no other symptoms. It makes you wonder if the diagnosis was correct.
On the other hand, I knew one man, the rabbi who married my mother and step-father, who was diagnosed in his early 40s, was in a wheel-chair five years later when he performed the wedding, and died a couple years later.
I am 47 and I have MS. I was diagnosed about nine years ago. I have had the one exacerbation that caused me to be diagnosed, and one other mild one that I was able to detect since then. When I’m not in the middle of an exacerbation, there is no difference between me and anyone else.
I would say the main thing that I do that is a little different from who I was 15 year ago is that I am more careful about not piling on stress. I do have a stressful life - I am the sole breadwinner for my family, while my husband is an entrepreneur with all the work hours but not the money - but I am on an 80% schedule and get one solid day to myself every week.
Is she starting on a drug, and if so, which one? I took Copaxone (an injectable) for quite a few years, and now I am on one of the oral drugs, Gilenya. I do not miss giving myself daily shots at all.
I have two friends with MS. One is often fine, and sometimes uses a cane. He does treat with an injectable drug every day, the purpose of which is to improve the odds that it will stay in remission. The other is wheelchair-bound and can barely move below the neck.
Like Hari Seldon I wonder if it’s one disease. I think they’ll come to see that MS is an umbrella diagnosis with categories within based on where the lesions are found (spine or head or both like me). That seems to tell a better story of what sort of disability the person will face. While determining disease progression (relapse-remitting, primary progressive, secondary progressive) is helpful, I think a better classification would indicate whether the challenges will be primarily mobility (including vertigo, foot drop, etc), or sensory (including numbness, L’hermitte’s, etc), or cognitive (including fatigue, etc).
Zipper JJ if I could keep only one of my 14 drugs to help with symptoms, it would be my anti-narcoleptic, to keep me awake. Without it I’d be totally disabled and unable to work or drive. I feel for your Aunt.
54 years old. Diagnosed in 2011. I have progressive multiple sclerosis. Went from a cane, to a walker then to an electric wheelchair rather quickly. Some pain and lots of clumsiness. Unable to work and am on Social Security Disability.
I second her joining the MS Society, they really made a difference in my life.
As an anecdote, my sister believes that either her symptoms are lessened when it’s colder or they’re magnified when it’s hot. She makes travel plans accordingly.
One sister diagnosed in her late 20’s. Slow-ish but progressive decline. Spent the last 7 years of her life bedridden unable to really function. Deceased at 52. (Sorry to be a downer.)
Other sister just diagnosed at mid-50s. We shall see.
A couple of co-workers with MS who have maintained active lifestyles into retirement.
If it helps to know, I’m working on it. Every day in the lab. When my wife complains about my vacant stares that demonstrate that I’m not listening, it’s because I’m thinking about the blood, brain barrier.
My sister, is 49 or 50 now, was diagnosed with chronic progressive MS at 29. I’ve known her for about 15 years, starting soon after she began using a wheelchair full-time. Back then she could slowly move her wheelchair, transfer herself to the bed or toilet, and grasp a pencil or paintbrush (she was a writer/painter) in her fist.
It’s a very slow and emotionally devastating disease. Today she has no movement in her arms or legs and can no longer raise her head from her chest without help. She can barely speak above a whisper and has increasing difficulty with swallowing - last year she nearly died and had to be fitted with a feeding tube. She nearly had to have a tracheotomy, but fortunately that was avoided. Her three sisters (including my wife) are her primary caregivers and they have a home health professional who helps her during the day. She lives with another one of the sisters and her husband and kids, in our neighborhood.
Anyway, I could go into a lot more detail but it would be a big downer. Fortunately most MS is relapsing-remitting (“the good kind”) and a great many of them enjoy a fairly normal life where MS is a fairly serious (or just annoying), but off-and-on, affliction.
