Your spasms

[Sunshine]

I see my neuro tomorrow early morning re the SPS.

One thing he had said was that he tested for SPS because my spasms are worse than what he usually sees in MS patients. He is an MS specialist.

I wonder, do you think so? How bad are your spasms. It seems like several here get wicked spasms, including Cat and Lazarus, no?

[Howie]

I am very grateful that I have never had a spasm. I wish everyone here could say the same.

[Sunshine]

I am glad for you Howie. They are the work of the devil. At least for me, they're the worst part of MS.

[Howie]

I had seizures for a short time, but my doctor started me on Gabapentin, and that stopped them for me. I'll never stop taking it. For me, that was the worst thing MS ever brought my way.

[Virginia]

BBS, I do have spasms. Mine kind of come and go. I do not have them all the time. I might have spasms two days one week, none the next and then 4 days the following week. Some are pretty mild, but some are severe enough that I can actually see muscles pulling and stretching. This is kind of scary. However, even though I say that, the worse part (other than not being able to walk much) is the paresthesia that I have almost 100% of the time. I am almost NEVER comfortable in my own body.

When I was first diagnosed and learning about MS my Neuro told me that I had an awful lot going on in my body. I thought for awhile that everyone that had MS did. Then when I got to know some of the people in my live support group I found that was not true. The facilitator was in a wheel chair, legally blind, but had no bad sensations going on. He had no spasms and no paresthesia. He could not relate to what I was saying when I talked about having the creepy/crawly sensations ALL the time.

We are so different with this disease. Maybe someone who has spasms will come on who can explain it better than I can. Also when I say I have spasms sometimes a couple of days in a row, I do not mean to say that I have them all day. It is just that I might have several throughout the day. I do think that when I could do yoga that seemed to lessen the severity of my spasms and the number of them. However, I do not recall that it did anything for the paresthesia.

I am glad DH is again going with you tomorrow. I hope for the very, very best.

[stillstANNding]

I have several kinds of spasms. The myoclonic ones are a surprise. They often happen in conjunction w a sudden noise or something that veers into my vision. That could be a person coming around a blind corner in an office maze or something jumping towards me from the TV. I have never seen IMAX. I don't know which would kill be faster, the noise or the pictures.

The dystonic ones are also a surprise. They can knock a leg out from under me. If I don't have something to hold on to, I can fall. Everything on the right side tenses and contracts then, in its own time, releases.

I have also had the toe thing and have walked on heels -penguin like- to the bathroom at night. It seems to be a night/early morning thing for me.

What is really bothersome now is tightness and pain ? spasms in the seat area. It hurts to sit or to be on my back in bed. It's driving be mad.

I take 0.5 clonazepam tid and baclofen 15-20mg tid. Other meds for other carp.

Good news, no bladder spasms!

Virginia, the only thing that helped me conquer the paresthesias was 1 Gm of solumedrol IV a month for 9 months.
ANN

[Lazarus]

Hello,
I was crawling in the fields today and picking peas! Yummy sugar snap. I was thinking that the bladder spasms have stopped while my esophageal spasms have started up again. When I have not been drinking enough water my leg spasms get active, especially at night. Instead of taking a med I drink water and that eventually calms them down.

I was thinking that I have found ways to help me control them all. Throat spasms and I stop eating for a while. I drink ensure if I can get it down to stay healthy. Bladder spasms have improved a lot once I eliminated the 6 to 7 cups of coffee that I was drinking each day. Leg spasms are relieved when I drink water ...lots of water.

I like feeling that I am controlling things myself.

[Virginia]

Ann, I took the solumedrol, but not for nine months. I took it on a number of occasions for 3 and 5 day stints. I took 1000 grams IV. I don't recall that helping, at least not after I went off the solumedrol.

[nuthatch]

I have spasms daily, my husband says I even spasm in my sleep. I awaken every day with a spasm and seem to have one after another in the mornings. They are always whole body spasms with an arched back, stiff limbs, even my tummy becomes hard. I can't even breathe momentarily. Thank goodness they only last 30-90 seconds! I'm told I turn red in the face, so there's no hiding it from anyone!
I often spasm when touched and always spasm when I move any body part after being still for more than 10-15 minutes. I am constantly moving, repositioning.
I don't take any meds for it, just deal with it.

[Sunshine]

God we put up with a lot!

Maybe my experience would make it a good idea to get the blood test to see if you also have elevated GAD , indicating SPS along with MS?

Especially the spasms stillstsnding gets. Those are common in SPS.

[stillstANNding]

TY. I read some of that forum. Not liking it. (Shudders and closes the shutters)
ANN

[Cat Dancer]

I have bladder spasms and leg spasms. The leg spasms were strong enough to wake me in the night, and if my legs are on the edge of the bed, can toss them out of bed (at which point I'm in danger of sliding off the bed.) At my last neuro visit last month, I was given gabapentin, which has helped tremendously.

I also have bladder spasms. These are severe enough that the spasms override the foley catheter, causing me to wet myself. I had gone through most of the meds doctors prescribe for these, without success. So now I'm getting botox shots for the bladder spasms, which has eliminated them almost completely. I don't have any other spasms in my upper body at all.

[Virginia]

BBS, I know you are having a different kind of spasm, however my brother use to have them in his legs and still does some. He had some so bad he would be limping when he walked. He doesn't have MS. He would take a small amount of yellow mustard and put it on his finger and eat it. It usually worked. I have not thought to ask lately if he still does this. You might just try it along with you regular medicine. Can't hurt. It is something all of us have in our kitchen.

[agate]

Virginia, would that be mustard powder or the kind in a jar that you spread on a hamburger or whatever? How odd that that should work, but it's also odd that my hiccups cure works. Always has worked for me, ever since I was a kid.

You fill a glass with water and spread a handkerchief over the top, then drink a bit of the water through the handkerchief. I don't know why it works but it must be something about interrupting your breathing in a certain way that stops the hiccup.

I have leg spasms waking me up at night. Until a spasm like that goes away I'm busy concentrating on trying to make it go away. I heard somewhere that if you keep trying to pull your foot toward your leg you can break the spasm. This usually works but it can take forever.

Other spasms I have don't involve pain. They just put parts of me into very weird positions, and I don't know what's happening unless I look. I guess those are spasms. I don't know what else to call them. When there's a facial spasm, it's always the left side of my face that droops, and sometimes there's a tightening sensation on that side of the mouth.

[Sunshine]

BBS, I know you are having a different kind of spasm, however my brother use to have them in his legs and still does some. He had some so bad he would be limping when he walked. He doesn't have MS. He would take a small amount of yellow mustard and put it on his finger and eat it. It usually worked. I have not thought to ask lately if he still does this. You might just try it along with you regular medicine. Can't hurt. It is something all of us have in our kitchen.

Yah. Tried that multiple times last year at ocean. No help.