25 years or more
 

Anyone here have MS for that long. I was diagnosed in 95. Now having more problem. Having muscle pain on the left side of my body, have no reason to have muscle pain, was paralyzed on the R. Side when I was diagnosed, started walking some later. Anyone have muscle pain, could it be MS. Neuro doesn't help much.

Hi poochie.

Could it be Spasticity (muscle pain, stiffness, cramping)?

Spasticity (stiffness) | MSAA

This is a pretty common symptom. I strongly believe in working with a Physical Therapist and/or Massage Therapist as well as gentle stretching/exercise. Muscle Relaxers can be used and your Neurologist should have given you some options :(

Hi, poochie, and welcome back!

Yes, I'm one who has had MS for quite a while--diagnosed in 1980, and so it's been 40 years now.

I've found that neuros don't help much. If you opt for one of the MS drugs, they can monitor how you're doing, but often it's "Diagnose, then adios" with them, I think. Maybe they figure that since they can't do much for us, why should they bother with us?


I don't have muscle pain so much as joint pain, and that may be due to my arthritis. I do have cramps though--leg cramps that wake me up at night. I've found that if my potassium level is low, those are worse. Sometimes muscle cramps can be due to a nutrition problem.

Snoopy has recommended physical therapy, and I've found that very helpful. I've had about 5 PT "courses" over the years--each one being 8 sessions. You do have to go to the appointments and do the routines they assign to you. That can be tedious but I've found that it pays off.

I'm not even sure you always need to go to the appointments. I've heard of some people with severe mobility limitations who have PT done at home.

Thanks guys, taking Baclefen, but doesn't seem to work real good anymore. Will talk with the Dr more.

poochie, I've never tried Baclofen but I recent had an appointment (by phone due to COVID-19) with my neurologist, and she recommended it.

But I passed on that idea. I'm really reluctant to try any new drugs because I'm getting on in years and understand that drugs act differently on older folks. And the experts don't always know how those drugs are going to behave.

Hi All,
I was dx 32 years ago. I am doing well considering. I've been infused with Tysabri for 14 years.. it's been a G-d send for me. :D
Linda

My neuro said she would have to consider my age before taking any injections. 74 yrs old

Thanks for mentioning this, poochie! It's nice to know that age is a factor being considered by the neuros.

I gave up on Copaxone about 8 years ago. A couple of times in recent years, a neuro has suggested an injectable or infusible MS drug, and I've always said I'd like to skip it because I'm so old by now that I don't think much is known about how these drugs affect people my age--who do tend to react differently to drugs compared to younger people.

I'm back after several months!

I received a diagnosis of "probable MS" in 1981 and have had few relapses since. I do wonder if there's a connection between aging and MS relapsing, as I've noticed small things that could be just getting older :D not MS. I also wonder about the connection between stress and MS. The last two years have been a horror show, and things showed up again. I'm doing better now, thank goodness. I have never taken drugs aside from migraine medicine and have decided to ride it out at this stage.

Welcome back, Ann N!

You've brought up two issues that are big questions for me too--the connection between stress and MS, and how to know if problems you're having are due to "just aging" or to MS.

For me there is a very clear problem with stress, especially now that I'm older and have had MS for over 40 years. I find it increasingly hard to tolerate stress, even types of stress that would have rolled off me years ago.

The aging question can be handy in a way. When a symptom or a pain comes along, I tend to chalk it up to aging and shrug and try to work around it or hope it will go away eventually. That way I don't have to worry about whether the MS is getting worse.

The chances are that it's getting worse. That's one thing it's known to do. But I've been lucky so far because it's been very slow about getting worse for me. It's still been a very rocky road but not nearly as rocky as some people have.

I see that I posted in this thread less than a year ago. I should update that information by mentioning that in December 2020 I went back onto Copaxone--this time in the generic form and with a shot only 3 times a week instead of daily. I don't know how helpful it will be for me at this point but I wanted to do what I could.

You have a lot of stress in your life, I'm sure. I hope that you can think of ways to cope so that you can get through the bad times. If you have MS for a while you almost have to find ways of getting around it so it won't act up.