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Old 09-14-2020, 09:30 AM #1
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Default 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.
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Old 09-14-2020, 10:39 AM #2
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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
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Old 09-14-2020, 10:50 AM #3
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Quote:
Originally Posted by poochie View Post
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, 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.
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Old 09-17-2020, 08:16 AM #4
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Thanks guys, taking Baclefen, but doesn't seem to work real good anymore. Will talk with the Dr more.
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Old 09-17-2020, 11:34 AM #5
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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.
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Old 09-18-2020, 06:26 PM #6
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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.
Linda
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