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sylvie74
Regular Member


Date Joined Mar 2007
Total Posts : 443
   Posted 4/10/2007 4:05 PM (GMT -6)   
I know that the numbers of people with MS who suffer from spasticity are pretty high. When I do a google search on it, it seems like most of the links point towards an MS site of some sort.

My own problem with this started sometime last year, before I started seeing my Neurologist.... It started in my outer left thigh, somewhat near the knee. Intense muscle spasm- tightening. Doesn't matter if I'm sitting, sleeping, exercising.. it just comes and goes of its own free will. Nothing relieves it. Tried heating pads, "Icy/Hot", and the last time I was at the Neuro's office, she gave me Zanaflex. That actually made it worse, and my spasms kept me awake most of the night. Since then, I have felt them in my left knee, sometimes in my left calf, in my right ankle, right wrist, and so on.. not nearly as severe, but it is worrisome to me that whatever this is (that is causing this problem) is spreading.

My Neuro told me that based on the fact my MRI showed no lesions, she isn't willing to diagnose me with MS. Most of my symptoms do fit, however. Of course they also fit many other issues.. (including Lyme, and I'm in the process of getting tests done with an LLMD out of state to address that possibility. However, thus far, I can't get anybody with Lyme to tell me this is a "Lyme" issue, or that the antibiotics to treat it are getting rid of it).

Can any of you with this issue tell me about your own troubles with spasticity? And what helped for you? And if this in any way led the doctor closer to a diagnosis of MS (instead of something else they might have been leaning towards previously?).

I hear this can be a serious problem if not dealt with.. but if antibiotics for Lyme (if I have Lyme- either alone, or with another health issue) don't get rid of it, then I need to have it addressed before it turns into something worse than it already is. The Topamax I'm currently on for pain is not working very well anymore, and it never worked for this muscle problem. :(
(undiagnosed) chronic pain, for nearly 10 yrs and counting..


Denda
Regular Member


Date Joined Jun 2006
Total Posts : 329
   Posted 4/10/2007 4:22 PM (GMT -6)   
Hi Sylvie -
Topamax is usually prescribed for migraines and seizures. I don't think it's for any type of pain, just headache types. I was on it for mild seizures and took myself off it since it made all my symptoms 100 times worse. I have spasticity also once in a while, but my neuro never even connected it with MS, she just told me she could take care of it with botox shots. :o( I haven't found anything that helps with mine but just aggressively rubbing it and hoping it will go away. I know this wasn't much help, but at least you know you're not alone.
I not only use all the brains that I have, but all that I can borrow.
  Author: Woodrow Wilson (1856-1924), 28th U.S. President


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 4/10/2007 6:30 PM (GMT -6)   
Hi Sylvie,
 
    Sorry about your spasticity issues.  It can be a mild problem for some and others is rather painful which sounds like in your case.  My husband's is mild compared to the other problems he has but Zanaflex didn't do a whole lot for him either.  Most of his spasiticity is in his legs though, Baclophen seems to work a whole lot better for leg spasticity for some reason.   Maybe you can ask your doctor about it and see if that works better for you.  Sometimes gently massaging the area eases the spasm too.  I wish you luck on your search for answers, feel better soon!
 
 
 
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sylvie74
Regular Member


Date Joined Mar 2007
Total Posts : 443
   Posted 4/10/2007 6:49 PM (GMT -6)   
Denda, you're right.. Topamax is a migraine & seizure med, but it is also prescribed for neuropathy. That is why my neuro prescribed it (because she and my PCP have no idea yet what is wrong with me). I was on neurontin, but that didn't do anything.. so she started me on 25mg/day of Topamax. It did help and a lot of my problems at the time seemed to fade.. for a while, anyway. :( Did aggressively rubbing your muscles and hoping actually get you anywhere? tongue I'm only kidding. It's not a fun thing, I know. :( As I said, I've tried heating pads, rubbing, etc.

HI Kimber :) Rubbing actually seems to exacerbate the problem, in my case. It's wierd. It is an off and on thing, but when it's happening, can last for an hour or more. It's really a pain in the behind!! Ugh.. I've read on a few sites about this Baclophen. I really should ask my Neuro about it.

Denda
Regular Member


Date Joined Jun 2006
Total Posts : 329
   Posted 4/10/2007 7:44 PM (GMT -6)   
You know Sylvie! It makes me feel better! :O) Eventhough it really doesn't help much, I at least feel I'm trying to do something. I did not know that with the Topamax and neuropathy... I wish my neuro would have told me that, maybe I would have given it more than the 3 mos I was on it. How long have you been on it?  I was taking 75mg, but the dr wanted me to take 100mg.  I couldn't handle the side effects.


I not only use all the brains that I have, but all that I can borrow.
  Author: Woodrow Wilson (1856-1924), 28th U.S. President

Post Edited (Denda) : 4/10/2007 6:49:14 PM (GMT-6)


sylvie74
Regular Member


Date Joined Mar 2007
Total Posts : 443
   Posted 4/11/2007 7:00 AM (GMT -6)   
I started off on the lowest dose- 25 mg, once a day. This was maybe back in October? I was on it for a couple of months before she wanted to bump it up to 50 mg, since it was actually working. However, I got sick the day after I went up to 50 mg, and the reaction to it was nuts. I went back down to 25mg and stayed there.. been ok with it til recently, when it just hasn't been doing enough for me. I'm prescribed for 50mg a day, though. (I take it at night before bed, and it helps me knock out. LOL But I don't like the occasional pins and needles in my hands and feet it gives me. Oh.. and the weight I've lost.. redface )

I went into the regular doctor (after years of not having seen one, because frankly, I grew tired of people testing me,and then shaking their heads and sending me home). (Before doing any of the lab work- which was not a lot, btw)..she saw me, said I had "neuropathy", and put me on Neurontin. Well, there's lots of kinds of neuropathy. eyes And the Neurontin didn't do anything. I was on it over a month, and I felt nothing from it aside from REALLY tired. That's when she sent me to the Neuro. I'm getting beyond frustrated here.
(undiagnosed) chronic pain, for nearly 10 yrs and counting..


Denda
Regular Member


Date Joined Jun 2006
Total Posts : 329
   Posted 4/11/2007 8:30 AM (GMT -6)   
Wow! I don't blame you. Yeah, that Topamax can be a godsend for some people and others (like me) just can't tolerate it very much. And it did make me sleep sounder, since I took all of mine at bedtime too, a good weight loss program too. :o)

I'm sorry I can't help you at all. I hope you find something and if you do, let us all know! :o) Off the subject of spasicity, when was your last MRI, if it's been over 6 months, maybe the dr will order another one to see if anything shows up this time.
I not only use all the brains that I have, but all that I can borrow.
  Author: Woodrow Wilson (1856-1924), 28th U.S. President


sylvie74
Regular Member


Date Joined Mar 2007
Total Posts : 443
   Posted 4/11/2007 8:47 AM (GMT -6)   
I've only had the one MRI... that was late September. And my EMG/NCV test was in late August. Supposedly my nerves are like that of a teenager (although my mom - who has MS - said the dr told her the same thing when she had one done). As for the MRI, the neuro told me "there are no spots or dots"... LOL Just some deformed bones in my lower spine, from birth. tongue
(undiagnosed) chronic pain, for nearly 10 yrs and counting..


Motown John
Regular Member


Date Joined Jun 2005
Total Posts : 475
   Posted 4/11/2007 3:15 PM (GMT -6)   
Wednesday p.m.
 
Dear Sylvie:
 
I take Baclophen, 10mg four times a day for my spacicit
 
Effective for me.  John
 
PS--My mother-in-law is named Sylvie!!

KAS1
Regular Member


Date Joined Feb 2007
Total Posts : 161
   Posted 4/11/2007 3:51 PM (GMT -6)   
Hi Sylvie,

I've apparently got an extra vertibrae in my lower spine.........welcome to the club of the deformed!!!!!

I hope you find some answers soon!!!!

KAS

Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 4/11/2007 5:23 PM (GMT -6)   
Hi Sylvie,
I'm also on Baclophen for alot of spasticity in my left leg. It helps me alot. I too tried Zanaflex also. Terrible headaches and really did nothing for me.
As far as rubbing the tight muscles, Try stretching them out instead, that will elongate the muscle and possibly reduce the spasticity. That works for me.
Lynn

LadyEMT
Regular Member


Date Joined Feb 2006
Total Posts : 109
   Posted 4/12/2007 5:54 PM (GMT -6)   
Hello,

Just adding my 2 cents worth. I suffer from severe spasticity. I'm on Baclofen and Gabapentin ( nuerotin ). The combination of both was the key for me. It did take a whiule for the groggyness to adjust. There are days where nothing seems to work. i do have a vibrating chair that seems to help...

Best of luck,
Hugs
Bonnie
Life Can Be A Challenge.... 
 Expect The Un-expected....
Live Everyday As If It Were Your Last.

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