[tovaxin_lab_rat]

Another thread about the dreaded spasms and spasticity and I can't sleep. It's 3 something in the morning and I've had about 2 hours of sleep. My legs are killing me and this has been ongoing for about 3 months, maybe a little longer.

I am in a clinical trial so can't just willy nilly change my meds without a hassle with the neuro in charge of the trial. I've asked for a change in meds and am not happy with the lag in response time, the confusion in the office with the new coordinator and frankly the whole issue.

I guess I should back track a little here. I asked for Lyrica for the neuropathic pain and the response was non-responsive. So I am not sure I can take it. So, I am not. Right now the pain is not neuropathic so it's a moot point. I will address that issue next week.

The pain is a combination of spasms and spasticity and I have been asking if the klonopin can be upped. I've been asking for over 2 weeks with no response. Today I finally get a response and it makes no sense but I increased the klonopin from 1 mg to 1.5 mg. I was hoping that it would make a difference right away, but it didn't. I also take Soma. No relief. None.

I know that part of the problem is most likely due to the fact that I have been sick with another cold for the past couple of weeks which makes my symptoms go whacky so I need to just relax and let my system settle down. But, this has been going on since my last exacerbation in April. I got no relief from the IVSM.

I guess it's one of the trials and tribulations of being in a clinical trial and not knowing if you are in the placebo group or not. Right now I am in "limbo" basically between the double blind study and waiting to find out if will be accepted into the extension study for the real drug. I should know by Mid July.

Sounds like it's the week for spasm/spasticity problems. Maybe we should start a club!

[Kitty]

Can you take baclofen? I take a combination of Baclofen and Neurontin. It doesn't always take away all of the pain but it usually makes it manageable. Since you're in the trial I wasn't sure what is allowed and what isn't.

I had a period of time where my legs would give me fits but only at night. It'd start up about 8 PM and last nearly all night long. It's so annoying and coupled with lack of sleep it can make all the other symptoms seem magnified.

I hope they respond to your questions - two weeks with no response is unacceptable!!

[Friend2U]

for the pain you are in and the lack of sleep. That is just no fun at all.
Hope you get some relief soon.

[tovaxin_lab_rat]

I cannot take Baclofen nor Zanaflex. That's why I am taking Soma in addition to the Klonopin. I also take pain meds, either vidodin or norco depending on how bad the pain gets.

I talked to my neuro about adding lyrica when it becomes neuropathic pain, but that's not the problem right now. It's just spasticity. It's just getting worse.

I suppose it will take a few days for the new dose of Klonopin to kick in.

[sassy]

Since meds are difficult to get approved how about massages? PT?

There's an article in Neurology Now this month about massage helping MS patients. According to the article tho you need to go to an expert so you get the correct type of massage.

I feel for you because I have been there and still suffer but not as much as before. And I certainly hope this isn't contagious via the internet because like you said seems to be the season for spasms around here.

[tovaxin_lab_rat]

Originally Posted by sassy

Since meds are difficult to get approved how about massages? PT?

There's an article in Neurology Now this month about massage helping MS patients. According to the article tho you need to go to an expert so you get the correct type of massage.

I feel for you because I have been there and still suffer but not as much as before. And I certainly hope this isn't contagious via the internet because like you said seems to be the season for spasms around here.

Sassy, I get a deep tissue massage every week. And she is a certified massage therapist and has been working on me for 4 years.

I think it's b/c I have been suffering from this horrible cold crap for the past 2-3 weeks.

[starfish]

Sorry you are limited by the study and not getting a faster response. It is so hard to function when you do not get enough sleep, and especialy sleep that is constantly interupted.

There is something called a medical massage that some insurance companies will cover. You have to go to a PT that offers it and get a PT evaluation before you start. The PT I went to had a massage therapist.

You will need a prescription from your doctor to get started. When I did this I noticed it helped my feet for a few days. I have been on zanaflex at night for almost 2 years. I can't take it while I am working.

So sorry for what you are going through, I hope you find a resolution soon.

[greta]

Isn't there a supplement that people take to help with spasms? Can't remember if it's potassium or something....What about quinine? Might that help? Good a reason as any to have a gin and tonic!

[Riverwild]

Cheryl,

You have GOT to be sick of being sick! Watching from the sidelines, the rest of us often forget how long it's been for those who usually suffer in silence.

I hear you on the spasticity. I resorted to a half a klonopin from the old man's meds, because I had done all my baclofen for the day, plus an extra dose and the tizanidine on top of it and I just couldn't sleep! It worked for a few hours, but I was awake again before 5 a.m. on my day off...

Your being in the study is limiting your relief from symptoms. Only you can weigh the two sides and decide what is best for YOU. If they are not responding to your problem, and they are the ones who make the decisions as far as what you can and cannot take, maybe it's time to get out. You need help, and they are not helping.

Doing your very best to advance MS treatments is a beautiful gift to every one who suffers from this stupid disease, but you have done your best, and maybe it's time to call for a break.

We're with you, no matter what your choice is.

[Bannet]

I'm sorry Cheryl I know what you are going through. I'm still having some spasms and they aren't any fun! The lack of sleep just adds to it.

I hope you can find some relief. (if you do, let me know)