extreme spasticity

[jean_619]

Hi all,

I have been having a bit of spasticity in my legs for a couple of months, but it was only this morning when it was really painful.  After walking around a bit, it seem to work itself out.

However, tonight with no warning, it seems that my whole body is going into spasms.  Like my whole body will want to stretch, start stretching and then I'll be frozen in that position for 5 seconds or so.  What is this?  Is this spasticity?  I thought that only affected certain limbs and not the whole body.

This is very scary because I don't know what is going on and it seems to be taking over my whole body.

Any thoughts on this?  Please pray for me.  I live alone and I'm scared,

Jean

[jean_619]

I wanted to post a simple update on this.  In the past year, I did not have any repeat incidents of this ... until last night.  It was the same exact kind of event that I originally described.  I'm going to call my MS nurse about it, and just by chance, I also have an appointment with my epilepsy neurologist on Tuesday so I will tell her too.   I'll let you folks know what I hear.

Oddly enough, when I had these events last night, I checked this forum to see if anyone had posted anything new.  I ran across this original post I made a year ago, so I was re-reading it.  Jen mentions an issue with gluten.  Right before last night's problems, I had eaten 15 donut holes.  (Yes, I know, 15 is a lot!)   So maybe gluten is affecting me.   I hope to find some answers soon.

Thanks to all,
Jean

[jean_619]

Jen --

Yes, I take the Flexeril every day -- 10 mg every 8 hours.  I was put on it because I have sciatica.

I haven't had any more incidents.  My neuro doc told me to call her if it happened again.  Hopefully it won't!

I think I should also start keeping a diary.  I think it would really help especially since I have other health problems -- not to mention that I have a horrible memory.

Jean

P.S.  Thanks to all of you -- you have made me feel much less afraid.   =)

[jenphilly]

Hi Jean -

Missed the original posts, sorry to say :(

Nice to meet you!   My big question for you....  Do you take flexeril everyday?   When my MS first really reared its ugly head, they thought it was a pinched nerve, so doc gave me flexeril...  My body reacted much the way you just described, it was everything was in a state of muscle spasm.  Granted at the time, we just thought it was the 'pinched nerve' and I was tense, never thinking flexeril took things to the next level :)

It went on for about 3 weeks and then I finally started wondering about the flexeril....  The doctors had no clue why I reacted this way...  but haven't taken any muscle relaxers since :)

Your issue might be entirely different, but just thought I'd share on the outside chance it might help!

I also started keeping a journal of what I ate, did, weather, etc. when things were kinda in flux and nothing was making sense...  they thought MS, then decided nah not MS when my brain MRI came back clean.  But kept having spasm and the tingling / numbness, so my logic was something must be triggering it when some days were so bad.   Pattern showed up pretty quick that gluten was a problem.  To this day, if I have gluten, I'm stiff as board all over the next day :)  Other people indicate they have issues with processed sugars or dairy.  Never know, one of those might be causing the pseudoflares too...  

Hope you're feeling better now!

Jen

[jean_619]

Just an update ... I saw my neurologist about this and she said she didn't know why that happened.  She has heard of this happening to other patients, but only on one side of their body.

[jean_619]

Oh, I forgot to mention, I'm on Copaxone also.

[jean_619]

I haven't heard back from the doctor yet, but as soon as I know something I'll post.

I'm on a muscle relaxant (Flexeril) and Gabapentin. But I'm not on baclofen.  My leg spasticity hasn't been bad compared to the others that I've heard in the group -- and usually as long as I stay on my muscle relaxant, I'm fine.  Would the Gabapentin help for spasticity?

I have no trouble taking meds -- I'm also on meds for my thyroid, epilepsy, depression, GERD and allergies. Of course, I'd like to take a lot fewer meds, but once you are on over 5, it doesn't seem that big of a deal.

Thanks for everyone's encouragement and information!

[Jacksmom516]

My spastivity is mostly in my legs and back.  I find it hard to keep my legs bent and when i first wake up they automatically straighten and then I get a muscle cramp in my calfs!  Are you on any medicine for it.  I take 40 mg of baclofen and it helps alot!

Keep us posted on what the Dr says.  I know if you are not a drug taker it is hard to take something every day,  I barely took aspirin and now it is 6 pills s a day and doses of ibuprofen and a shot once a week.  Takes some getting used to but..... better than the alternative,

Also stretching exercises help me tremendously to relieve the tightness,

Take care and hang in there
Tracy

[heartfelt77]

  Hello, Jean my name is Misty.  I don't believe we have met.  I would have to say yes it is muscle spasms I get these after sitting for even an hour and then lying down and my whole body will tighten up.  This is a great support system and you need to know your not alone.  I would try and do some deep breathing along with thinking positive.   You may want to also talk to your doctor about this he can maybe help you with a medication to calm these down.  

  I'm sending you my support, hugs, and prayers....   Know that god loves you and is with you all the time. He will get you through this.

Hugs.....  Stay strong
     Misty