Multiple Sclerosis (MS) Support Group

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tarabunnyears 12/14/2011

I have muscle spasticity.

I know I have asked this before, but am desperate as to what to do.

It has spread like this before, but it is EVERYWHERE.

My neck, fingers, legs, arms, back, face. jaw, throat, chest.

I feel like I am being strangled.

I am losing the ability to walk at times.

This has been going on for a week.

I have no neurologist. Lost mine and it's a long story but I have none.

Is this overall spasms the MS? Anyone else deal with it?

I am on Baclofen and Valium. It is not making a difference right now. It usually works, and is still keeping it from being as bad... but not enough.

I am in excruciating pain.

Does MS cause spasms/spasticity all over your body?

Any suggestion as to what to do? Any medication advice, I can run by my GP, he is the one caring for me right now and the one prescribing the Baclofen and Valium.

ezone 12/14/2011

The only suggestion I have is to get a baclofen pump. But find a competent doctor, an experienced doctor to do this.

I have a friend who has the kind of spasticity that you speak of. The only thing that would relieve it was the baclofen pump. But it was installed incorrectly the first time and it had to be redone, so make sure that the doc is a good one and experienced on this. Because several people swear by this. This gave my friend relief.

Otherwise, she had to take so much baclofen that she was like a wet noodle and lost her strength when her spasticity was under control by taking baclofen by mouth. It just took too much baclofen to work. Your spasticity needs to be treated. I agree that Valium helps too because she said that it worked for her as well.

I am so sorry that you are in so much pain. Best of luck.

deleted_user 12/14/2011

My neuro had me wean off Wellbutrin so I could start taking Amitriptylin, which is an antidepressant, but also helps with MS. In my case, it seems to help both my depression & some of the spasticity- maybe it will work for u too- good luck!

mjideas 12/15/2011

I see a physiatrist to manage my spasticity. They are skilled in treating musculoskeletal problems. He puts in baclofen pumps. You want an anti-spasmotic drug There is zanaflex as a stronger drug . I have hip flexor spasms ad he has tried Botox...so far not much help.

I take 10 mg of percoct and that is known to supress spasms Just not a good long term solution..But being in crisis with these spasms you have it might be a short term solution I think you need a work up by a good neuro. Some people smoke pot and have a lot of sucess. I also take magnesium - check with Lorrie on line about dose.

Narcotics suppress spams/ It is worth a shot. Long term the pump maybe best solution

Show your doctor this article. belpw. Use of narcotics discussion is half way down page

wwww.tionalpainfoundation.org/articles/474/managing-pain-with-ms

http://onlinelibrary.wiley.com/doi/10.1111/j.1399-6576.1987.tb02667.x/abstract

Mydr. treats MS and spinal cord injury because both have significant spasm problems

Good Luck. I'd like to know what happens

Melanie

tarabunnyears 12/15/2011

Thanks for the info. Just came back from doctor. Adding zanaflex. I hate the way it makes me feel but better than this pain.

Being referred to a neuro. I lost my old one when she moved and the one I tried after really messed me up so i have been avoiding finding a new one. Especially since i live in an area with no MS specialist. But I will give this one a chance. Better than nothing.

I will look at all the info and go see my neuro better informed. Thanks everyone.

mjideas 12/16/2011

I saw my neuro today (an MS specialist) and have additional info.. My spasms fall into a category called tonic spasms and the MRI showed there is damage that might be causing them I've had MS for a long time.

So glad to hear you found something to work. The kind of spasms I have are called tonic spasms.. She has prescribed tegretol an anti seizure med to treat these spasms I have in the AM and then 12 hrs later in the PM. Tegretol has been used since the 60's.

Just hope it works.I have been struggling with these for a year while drugged out on percocet to supress them.

I wanted to share this info with you so you get a headstart on treatment. Sounds like you have. You have a wonderful PCP.
Mine is a total loss. Not interested in helping me at all.

Take care

Melanie

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