Spasticity: Share your questions and experience here!

[Punni]

Sissy

Sorry to hear that pain can come to your neck Thanks for the tip about a heating pad, I will try that. I feel better today and will try to go to work tomorrow, are you still able to work? What is a pow wow?

Hi Punni
It help pretty good,sometimes. But a heating pad or rice bag help's it work better, I think. I have had it in my neck and legs today. Yes it can bring on the tears. I have had it a few times where I swear the bone was going to snap in my lower leg. THAT brings on the waterworks really bad.

POW-WOW ANYONE?

[Sissy]

I'm sorry Punni I forgot to answer your question about working. No , I can't work anymore and it would be so good to have some extra income. In 1987 I had 2 back surgeries and 2 cancer surgeries ( I was only supposed to live 2 yrs..LOL..oop's) that put me on disability. I was a Pedi Nurse at the time and had been fired for missing too much work .

Any-whoo in the 2001 I took up quilting and got a part time job in a local shop..I loved it! I became a Pro Designer and teacher. But I started falling asleep at work (while talking to people) in my truck, while reading etc.
Anyway my Dr. told me I could not work anymore. I was so so tired and weak all the time. I could not read anymore to design my quilts, all I wanted to do was sleep.

They told me it was depression, but with all the other SX I knew what it was then but my Dr. refused to test me or refer me to a Neuro. That went on for at least 8 yrs. My husband finally took me in to the Dr himself because I was so out of it I could not talk or walk straight. HE FIRED our Dr of 20yrs. because he said that there was nothing wrong with me!!!

So within 2 weeks I had a new Dr and a Neuro and DX of Benign MS( all the SX and criteria but only a couple old leasions) I still do not understand what it means really.I have been in hospital with flare's and responded well. My SX are worse. Yet here I sit !

A Pow-Wow is a Native American gathering with a lot of Beautiful N.A Indian's in full regalia dancing and singing. Some have craft's and food also. It is the most BEAUTIFUL thing I have ever seen. I have a lot of Cherokee in my family, but no card to prove it . It is my greatist wish to find my roots.

[Mariposa49]

when is relieving spasticity detrimental to strength

I have been diagnosed with MS since 1994. I did not have spasticity for the first 8-9 years but have had increased muscle stiffness in my legs for the past several years. I have been treated mainly with baclofen and am up to 120mg/day. I do not have pain, but my muscles are very tight. It's like trying to bend a board. My neuro has mentioned using targeted botox shots to relieve some of my lower extremity stiffness. I have concerns about relaxing my leg muscles because I feel I do gain some strength from the stiffness (if that makes any sense). How much should I worry about relaxing those muscles that may cause leg weakness? Should I just leave well enough alone?

[mtngl]

Spasticity and medication side effects

Hi Mariposa49,

It can be difficult to tell which medication is causing weird side effects. For me, it seems likely that the Baclofen is causing me to feel nauseated and dizzy. However, I cannot be sure about this. I recently started taking Tramadol and I hope that I can tolerate it. I tend to be sensitive to some meds. Hope that you find some comfort..and peace of mind.

Regards,

Mtngl

[audima]

First symptoms

Spasticity along with walking issues were my first symptoms - was treated for numerous other things before before being referred to a neuro and quick dx of MS - 2004. Taking baclofen and it does help during the day. I was having those "charlie horse" cramps at night and have started taking Potassium, Magnesium and Vit E along with the baclofen each night before bed and it has reduced the cramps for me. They seem to run across the bottom of my foot and up my leg - turning my foot to a very unnatural position and yes, they are very painful. Glad to hear so many are getting help with the "pump" Nice they are getting the relief.

[Portia]

Mariposa, I wonder the same thing about using Baclofen. Will continued use of muscle relaxants just lead to increased weakness? I worry about this because my legs were getting weaker even before my diagnosis and before I began taking Baclofen.

[Sissy]

Hi Portia, I am wondering the same thing. Also my pain is mainly in the back of my legs right now. Is this normal? They are very sore to the touch even. Sitting is not a good option right now ,so I have to lay down. Plus with any repetative movement of my hands,arms or neck, it starts in there too. Right now I am miserable from my head to my ankles.

This has been getting worse over the past couple of months and I am not getting much relief. On another post it was mentioned that I was taking a very low dose of Zanaflex (2mg q8hrs) so I am going to increase them to 2mg q4 hrs and THEN call my Neuro Monday. His partner is on call this weekend and I do not care for him .

To Much Pain For a Pow-Wow

[dann]

tizanadine

Started this 2 wks ago - hoping it would relax my stiffness - very med sensitive so smallest dose is 2 mg so would take 1mg (split tablet in half) at night. Everyday now I feel like I have sleeping pill hangover - think I need to stop and may try the baclofen again. I liked it, but after taking for 5 months or so, ended up having sore throat which went away with benadryl.....I stopped baclofen then as I thought it caused the throat difficulties, but who knows as I had taken it for 5 months w/ no problem......constant guessing game, but do not want to be in a fog 24/7!!!!!

[rdmc]

I've been diagnosed about 8 years, but my neuro says I've probably had MS for much of my life. Pre-diagnosis, I would try to take walks, and would always complain that my calves would stiffen up so much I could hardly complete a mile. I always thought if I just kept at it, I"d get some stamina, but I never did...now I recognize what I was feeling was spasticity.

Anyhoo, at the time of diagnosis, I was already experiencing some significant spasticity, and what I thought was drop foot. I was put on Zanaflex and took it for quite a few years. I took 2 mg, about ever 4 hours during the day, because I was working, and more than that would make me fall asleep.

About a year ago the Zanaflex just seemed to stop working, so the neuro put me on Baclofen. I got sleepy with it too, but I was working from home, so I could take a break if I needed. Eventually I had ramped up to 80 mg. and still could not get my right foot more than 2 inches off the floor and could not put my right leg in front of my left, so I'd step with my left, then bring my right leg up to meet it. My whole leg and hip would spasm and sometimes get locked in a position. The pain was awful. Ended up in the ER once because the leg was so stiff and sore the doc wanted me checked for DVT.

So the neuro recommended a pump. I went for the test and found what I and the neuro thought had been foot drop was actually a spastic contracture at the ankle. An hour after the Baclofen injection I could flex my foot, it was unbelievable.

Got the pump and the results are wonderful. No pain (well no pain from spasticity by during the PT therapy my muscles were screaming from being used normally again.) My legs now move in a normal fashion. When I walk, I look like I'm walking normally instead of limping and lurching or shuffling. I still don't have a lot of stamina...legs tend to get weak after about 1/4 mile. But I can move, I'm not sleepy and I'm so impressed with the QOL it's given back to me.

Still take a small dose of Zanaflex for my spasticity in one arm and side of face, but not enough to notice side effects from.

Sorry for the long post.

[BJG55]

which drug

When I was first diagnosed, I didn't really understand what spacticity really meant. I had a problem with a stiff neck that wouldn't go away and thought this might be spacticiy. Then, I started having the leg and feet cramps. I mean wake up in the middle of the night screaming and jumping out of bed it hurt so much type of cramps. Now, I have problems with my neck/shoulders and my r. leg.

I take Zanaflex and Ampyra which both help in different ways. I use the Zanaflex when I'm going to work out or be on my feet for a long period of time. The Zanaflex helps prevent my leg from becoming a plank of wood. It's the extra boost that I don't get from Ampyra. I'm lucky in that the Zanaflex still works for me. Also, when taken with the Ampyra, I don't usually get sleepy.

What I don't know or understand is why a particular drug is prescribed. Is one of these drugs more effective than the others? Normally, I would have asked my neuro these questions, but I was so grateful to have any relief in the beginning (long, long before I discovered MSW) that it never occurred to me that I had choices.

[Pressednotcrushed]

My initial symptom was spasticity, but i didn't realize it. Looking back the spasticity in my legs were pulling on my joints and causing all my pain. I started to realize that my leg muscles were the culprit rather than my joints in PT.

My physical therapist kept telling me to to relax my muscles and I kept telling him they were relaxed as I could make them. I am on flexerill (started it for back pain but I noticed when I am off of it I got back into the not being able to walk without tears state so PCP let me go back on them) but my muscles still feel so tense all the time.

I was dxed on the 17th on June and have only seen my MS specialist that day. My Neurologist said she didn't want to make the decision so she referred me to an MS specialist. The way she said it lead me to believe that I would not be Dxed and be sent on my way to figure out what was wrong.

I was in a bit of shock about my Dx at that appointment and my shoulder had a burning patch that was driving me crazy so the Dr focused on getting nerve pain dealt with and starting a DMD. I wish I hadn't been quite so surprised by getting my Dx so I could have been better prepared to deal with my wost symptom rather than the one that was making itself the most known at the moment.

My second appointment is in a few week and spasicity is at the top of my list to deal with.

[alanpgh]

New Spasticity Webinar on July 12!

Pressednotcrushed:

You might want to register for the upcoming Spasticity Webinar, scheduled for July 12. This might help answer some of your questions on spasticity. You can send questions to QandA@msworld.org.

Just click on this link:
http://www.msworld.org/resources
and then on the "Register Today" icon near the top.

Hope you get some answers to your questions about your MS!

Best Wishes!

Alan

[Sunflower214]

Spasticity Question

I just have a general question. Does spasticity get worse right before or during a relapse?

[Sissy]

Sunflower
Im not sure myself..but I am beginning to think it is one of those sx that you have any. I know with mine it is that way. This time it has been going on for almost 2 mo. I am having it worse when I am sitting or standing to long. I have a call into my Neuro right now for HELP.

LOL..I may take Allan up on the Spasticity Webinar,if I am at home. May have to force myself to go get some groceries... I do not want to go anywhere anymore.

BUT I would a Pow-Wow

[alanpgh]

Spasticity Webinar July 12 at 7:30PMET. Register or send questions now!

The severe spasticity webinar is live, July 12, at 7:30PMET.
We've sent your questions to the speaker, Dr. Hughes.
There will also be a patient speaker.

You can register by clicking here:
www.releaseyourpotential.com/ms
Details will be emailed immediately after you register!

Send your questions to QandA@msworld.org or bring them to the live event!

Hope to see you tomorrow night at this live spasticity webinar!

Alan