I'm a fighter.. I'm a Conqueror.. I'm a winner...

[Msbeauty01]

Hello my name is Cynthia. I have MS and it has taken a toll on my body. I'm in constant pain and very weak. It does not seem to be getting any better. I'm currently taking Rebif but I don't see a difference. I am having very bad muscle spasms in my legs when I sit up. I open for any suggestions..

[IFwczs]

Welcome to this wonderful place, Cynthia! We all have MS and struggle with it daily. You will not find a more sympathetic group to share your MS (and not only MS) troubles with. Sorry to hear about your pain. The trend is towards Ocrevus. According to my neurologist, this is the only MS DMT to slow down disability. It is a bi-annual infusion, and there are no side effects. Have you heard of it? The next thing that I would want to share with you is diet. What do you eat? Are you following any diet? Irina

[greaterexp in reply to IFwczs]

Ocrevus can have many side effects, but most seem to be tolerated by most people. Every medication has the potential to have many side effects, even plain old acetaminophen.

[IFwczs in reply to greaterexp]

Absolutely agreed. I had most violent side effects to the alpha lipoic acid. But as far as DMTs go, at least it doesn't make you suicidal, like apparently Avonex.

[greaterexp in reply to IFwczs]

That is a scary side effect! it's frustrating in a way that we all react so differently to any given medication, but on the other hand, it's good that even if I can't handle something, it might work well for someone else.

[Lilith08]

Hello and welcome. I’m sorry you’re having trouble with spasticity. Have you ever tried Baclofen? That has helped me a lot. Before I was prescribed it I didn’t even know I had spasticity—only that my arms and legs would get really tired with any exertion. But that was more for the stiffness, not for noticeable spasms (both are part of spasticity). I wonder if magnesium would help. I have used supplements, Epsom salts baths, and even magnesium spray (the last on my calves).

[Bodega1939 in reply to Lilith08]

Yes, I take magnesium but not just "any" magnesium. Doctor's Best High Absorption Magnesium after every other type I tried made gastric reflux a very difficult issue. It is chelated with Albion Minerals. Because I already take more than two pharmaceuticals (abatacept, Forteo, Ampyra) I knew I'd never know if my gastric reflux was due to the three drugs +one interacting or if it was just the the new one, I chose to go with a common supplement without more "stuff" in it. So far it has worked perfectly and absolutely no observable or felt side effects and, of course, best of all, no horrible spasms.

Since I can't predict success with any drug or supplement, mostly it is a try and see effort. So far, so good and interestingly a big positive change in the urinary incontinence besides of the the quick reduction in spasms which I did not expect. (You know, my bladder spasmed, got as hard as a rock, and painful, painful, painful. I massaged it externally, meditated, etc. and finally, when it relaxed, it worked. Nobody should have to cope with a spasming bladder!)

[Jesmcd2 CommunityAmbassador]

Hello Msbeauty01 I love your quote! Very inspirational!

Some have said CBD oil has helped.? I'm really sorry your going through this though!🤗💕

J🌠🦈

[greaterexp]

If your doctor is aware of the problems, but hasn't found any solutions, it might be time to consider finding a new neurologist. Have you talked to him/her lately and reported your issues? There are several medications that can help with the spasms and pain, like Baclofen and Zanaflex for spasms and gabapentin for pain, but your doctor should be going over those with you. There are newer DMTs (disease modifying treatments) that may work better for you than your current one. Ocrevus is getting a lot of attention lately and we read about lots of good results. It DOES potentially have side effects, as do all drugs, but your doctor should be discussing your options with you if you are seeing progression. Together, you can decide which medicines you feel most comfortable with and which ones are more likely to be of benefit to you.

We can only offer suggestions, the main one being to let your doctor know about your concerns and to look for another one if your issues aren't being addressed.

I hope that you get some relief soon and some answers to your questions. Please let us know how you are getting along and what you find out from your doctor. We care about one another here.

[Msbeauty01 in reply to greaterexp]

Thank you.. I take Gabapentin and Lyrica

they give me relief and help me rest. I also take a Muscle relaxer which makes me sleep as well. The spasms only happen when I see sitting up. I am going to see a different Nuroligist because I feel like the one I have isn't doing his job. I'll keep you posted...

[greaterexp in reply to Msbeauty01]

Thank you. I wish you the best with a new neurologist and hope he/she is one who listens to you.

[MarkUpnorth]

Welcome Cynthia! I'm going to take the easy way on this....and copy and paste a post I just made to Linda, above yours. But yes, Magnesium! I take magnesium citrate 2 hours before bed every night, after trying many many drugs, for RLS. This works better than anything. And yes, I take D too.

Yeah, that post I was going to copy and paste....is too long to copy....just kidding. But look under Linda's post "My Intro". In short, beyond the symptom you are asking about.....my advice on fighting M.S. What you EAT.

From the guy who went from so many meds, who received a gazillion M.S. "gifts", to... no new relapses in the past 5 years, and actually helping getting rid of a few of those nasty "gifts", and coping better and better with those I can't shake!

The Baclofen, Gabapentin, and essentially anything out there back in my days of Neurologic Drugs, either did nothing, or helped for a bit, then stopped working. CBD does nothing for my RLS (which is not spasticity), but close.

[RoyceNewton]

You do seem to be quite positive and that is a good thing. Even taking a Disease Modifying Therapy (DMT) not let you see any difference. Actually not seeing a difference is a good thing. I might suggest that you may ask your Neurologist (Neuro) why you are not on a stronger medicine. Ocrevus is the strongest currently I believe.

[Msbeauty01]

Thank you for that. I changed Nuroligist for to the old one not doing his job. All my meds were updated or changed. I was diagnosed with PMS All my symptoms have gotten worst. Goes what my new MS medicine is Ocrevus. I am still positives and will continue to check getting better.