Relapsing Remitting MS

[Anonymous]

My younger sister was just diagnosed with relapsing-remitting MS. She is 31 years old. Of course this news is very upsetting, but doctors are hopeful they can control it with medication for many years.

Does anyone on here have this form of MS, and if so, how has the disease progressed since you were diagnosed.

Also, I know there is a genetic component, but seemingly no one in our family has ever had it that we know of. I am wondering if as a sibling I should see neurologist or be tested - apparently there is a 5-10% chance I could have or get it too. Does anyone else have a sibling who was affected as well?

Thanks for any insights you can share.

[Anonymous]

I'm sorry, it must be a shock. No help, but this is the kind President Bartlett had on the West Wing.

[Anonymous]

A close friend of mine got the same diagnosis about 20 years ago, at the age of 20. Since then, she finished college (MIT), got her MD-Ph.D., had a child, and is now a practicing doctor.

[Anonymous]

My mother has the disease. First, the disease progresses differently for each person. My mother's younger sister (my aunt) also had MS and she progressed far slower than my mom. Additionally, the drugs for MS today are much, much better!

Relapse and Remitting is a stage of MS, like progressive relapsing is another. If you have some of the symptoms, I would get checked. I worry from time to time about getting MS but at 43 I am a bit old.

[Anonymous]

Progression is different for everyone, so there are no firm answers. I've had it for 12 years, with 3 more major episodes. Other than that, I'm more or less symptom free, and the disease has not progressed (knock on wood). I don't take meds at the moment, because of being pregnant/trying to get pregnant. Although I do take a high dose of vitamin D3.

I'm not sure you can screen for ms if you don't have symptoms.

Good luck to your sister.

[Anonymous]

I was diagnosed with relapsing/remitting MS six years ago when I was 38. I presented with blurry Vision. Since then my vision has been largely fine My main other symtom is bouts of extreme fatigue. After my diagnosis, I went on to have a second baby. I credit the new drugs and my efforts to keep my stress levels under control.

As for you, I would be mindful of symptoms and see a neurologist if you are concerned about something. I do not think a dr would order a brain MRI without symptoms.

Hope this helps.

[Anonymous]

This is PP. One of my sisters does have some neurological issues and went through a thorough work-up. They ruled out MS for her.

[Anonymous]

I was diagnosed in 2011 also with vision problems (optic neuritis). Had 1 additional episode the following year. Since then no other symptoms and haven't gone on meds. Note that I have also been pregnant or nursing the last 3.5 years and that seems to keep me healthy for some reason. I have an almost 3 year old and an 8 month old. I am hoping to nurse my youngest until she is one before neurologist urges me to start meds.


No one in my family has the disease.

[Anonymous]

A couple of thoughts.

First, watch the show west wing. It is on Netflix, and deals with this, as in the show the President had the condition.

Second, I know three people that got it in there 30's. Two are in their 50's and doing well. My cousin decided not to have kids (not because of worry of transmitting the disease, but because of stress to the body).

I do not think it is genetic, but am not sure. No one other than my first cousin has it in my family.

[Anonymous]

Anonymous wrote:I'm sorry, it must be a shock. No help, but this is the kind President Bartlett had on the West Wing.

[Anonymous]

My cousin was diagnosed when she was in her early 30s. She's now in her mid-50s and, overall, she's doing pretty well. One issue I have noted, though, is the effect on her kids, who are now in their early/mid-20s. They have grown up hearing all the time -- from her husband and, to some extent, from her sibs and cousins, including me -- how important it is to minimize stress on her. In some ways I feel that this has contributed to their having somewhat distant or not completely honest relationships with their mom. At times I've been a confidante of her kids (my own children are just a bit younger), which I thought was being helpful. Looking back, though, I'm not so sure, and I wish I had considered the pitfalls earlier.

[Anonymous]

My mother had relapsing remitting. She was diagnosed when she was 30 and pregnant with my sister (main symptom was the optic neuritis) - before I was born. She really had no exacerbations or issues until she was in her 50s and then she started to become unstable and eventually needed a scooter when she was in her 60s. She couldn't walk at that time but was very sharp mentally - still doing crossword puzzles into her 80s. She passed away at the age of 83. She couldn't take any of the drugs because her MS had progressed too far for them to be effective when they were developed.

As far as genetics, with the research I've done, I don't think MS is hereditary. I do believe that families have a predisposition for autoimmune diseases - that part is hereditary. My mother's father had rheumatoid arthritis, and my sister, niece and I all have celiac disease so there are lots of autoimmune issues in the family. My mother was tested for celiac disease but was negative.

The odd thing with my mother is that when she was in her 20s her older sister was married to a man who developed MS in his 20s - he had progressive relapsing and passed away at a young age - and my mother spent a lot of time with them. Now I know you can't catch MS, but it is still unusual. The only common factor besides spending time together is that they both grew up in New England and I've read that the incidence of MS is higher is colder climates with less sunlight. My sister's theory is that this could be attributed to lower vitamin D levels but who knows.... I really wish they would find a cure for this disease.... (and Alzheimers which got my father)

MS stinks, but with the new drugs these days, OP, your sister has a much better chance of prolonging the major symptoms of the disease.

[Anonymous]

I'm sorry your sister was diagnosed with MS at a young age. MS can look very different from person to person, and it will probably take a little while to see what her experience is going to be like. My dad has had MS for about 15 years, since his mid-40s. No one else in my family has it. I believe he has relapsing-remitting and periodically gets MRIs to see if he has any new lesions in his brain, but he's been stable for a while now. He used to give himself shots every other day, but he has not really kept up with them lately.

His main symptoms are fatigue and some cognitive issues. He had to retire because he couldn't keep up at work. If you met him you wouldn't know that there was anything wrong with him, but people who know him well can tell when there are times he isn't really processing information. He pretty much can't make it through a full day without a nap.

Having said all of that, it really hasn't been THAT bad. When he was first diagnosed, I was scared because I didn't know what to expect so I prepared for the worst. I would say his health is just 1 step below average and he is able to pass as healthy.