muscles freaking out

[salamandertom]

I am going to see my neuro tomorrow, so i am assuming I should just wait to call - tell me what you think.

This morning as soon as I woke up I realized my left calf was periodically spasming. It has been doing it all day - it really hurts. Behind my left shoulder blade is doing it too - that one is so bad that I think I might lose my mind sometimes. Then, my MS hug is practically intollerable. I am on 10 mg of baclofen 3x a day - but this is ridiculous. The MS hug is just getting worse and worse. I am so discouraged. i am trying to focus and learn and take quizzes and I can barely think b/c this stuff is so distracting.

I mean, is it really going to make any difference to call right now? Thanks. Oh, and would resting help this or anything help this or is there just nothing to do for the muscles and MS hug?

[MSGina]

Hi =)

Sorry you are having such trouble.
Sounds like spasms of the worst kind!!

You're on a pretty low dose of Baclofen.
At your appointment tomorrow I would ask the doctor about increasing it and I also have a script for diazepam (generic for valium) 5 mgs for days the spasms just can't settle down.

When mine are horrible (they can just wear you out can't they?) I use ice packs 15 minute and that seems to calm things down.

[KMCangel00]

Hi Sasha - sorry to hear that your spasticity is driving you more nutty than usual.... I'm in the same boat - talked to my neurologist's assistant today and she did end up giving me a new script for the bac @ 3x a day... it just seems to be getting worse by the day...

I have not been lucky enough to really experience the MS hug, so I can't relate as much to that as the crazy muscle spasms...but it sounds pretty horrible I'm so sorry I don't have any great advice!

How have you been doing since your post? Did you end up calling your Neuro? I think, you should do whatever you think you should do. I know that's not a huge help but it's still so new, you need to do whatever you are comfortable with. Please let me us know how you are doing!!

[GEM]

I'm on multiple medications for spacticity, so your neuro can add something to your baclofen. I'm also on tizanidine and clonazepam (a relative of valium).

[salamandertom]

I didn't call. I lost my cell phone in my car this morning before my 8 a.m. class, and then tried to find it in between classes (10 minute break) but couldn't. I ended up finding it after my lab, well past 6 - which of course did me no good for calling. A day in my life, lol. My eye has been freaking out all day too. It is very annoying.

I definately need more of something, I am miserable. I will be talking to her tomorrow about all of this. Thanks for your responses!

[jumpinjiminy]

Oh bummer. Definitely call. Mine got to that level on the same dose as yours. It even got to that level on the 45mg/day. Sometimes it's just not enough. Rest can help (sometimes), as can adding in other meds, but they can make you tired. Baclofen doesn't make me tired, so I prefer it over the others, like clonazapam (which bottoms out my BP and I crash big time).

I admire your energy and drive. I hope you find a solution. I've tried stretching, rolling on foam rollers (ask your PT or do a google search), chiropractic adjustments, yoga, hypnosis, etc. It all helps.

I had one horrible dystonic spasm in the rhomboids pulling all of my ribs out of place. Every time I turned or tilted my head, the spine would give a "crack, crack, crack crack," you know the sound. Crunchy, crunchy, crack, crack! A chiro adjustment helped about 50%, took away half the spasm, put everything back in it's place, well, most of it, took away half of the pain and tension. It took about a week for the rest of that to calm down and it slowly disappeared. That was on 30mg of baclofen a day.

I'm now on 45mg/day and still have some break through tension that causes headaches from time to time. But they don't linger. They come on shortly before my next dose and go away shortly after I take it. Upper trap trigger points.

[babygirl_vic]

I'm on Zanaflex, Robaxin, Xanax, and Meprigan for my spasms and pain. My muscle relaxers are not working either!! And my neuro does NOT write RXs for pain pills!! So my PCP has been giving me the meprigan and wanting 1RX of like 50-60 to last me for like 2-3 months!!! And it's just not working!! I've also had the eye twich and blurry vision going on for about a day and a half! I hope you get some relief!!

[gomer]

Sorry you are having such a tough time.

Who knows, maybe going in wore out and all those Sx acting up WHILE you are seeing your neuro will help prompt your doc to effectively treat your Sxs.

many time I had serious Sxs but they would be gone or almost gone by the time I could get a doc apt. That just added to my Ms Dx delay.

Gomer . .Dr of Been There, Done That

[salamandertom]

Oh bummer. Definitely call. Mine got to that level on the same dose as yours. It even got to that level on the 45mg/day. Sometimes it's just not enough. Rest can help (sometimes), as can adding in other meds, but they can make you tired. Baclofen doesn't make me tired, so I prefer it over the others, like clonazapam (which bottoms out my BP and I crash big time).


I'm now on 45mg/day and still have some break through tension that causes headaches from time to time. But they don't linger. They come on shortly before my next dose and go away shortly after I take it. Upper trap trigger points.

Thank you. I am having BP issues right now which is the one of the things that prompted my visit. My blood pressure is high, but my pulse is low. I am on a beta blocker - and my BP was always stable for a whole year until my flare started. Now it is getting pretty high with this "hug" and these spasms. I thought I was having chest tightness that you associate with cardiac issues with the BP, but when I spoke to the MS doc Tues morning he was quite sure that it is actually the MS hug since my EKG was normal and my BP has been traditionally stable until the MS started flaring. Now we may use a med to treat the "hug". I have no idea what that is, but it sounded scary.

He was hesitant to add any new drugs considering all my symptoms without seeing me first. I like him, and his approach. I think doctoring over the phone is a bad idea personally. I mean I get that for some things like adjusting a dosage it is fine - and even nessicary. For something like this I just think it would be dangerous. I like my doctor.

Interesting you mention the headaches. I have had a headache for about 2 weeks straight now. I am sure it is a combo tension/bp thing.

[inmoni5]

Sasha, I am so sorry that you are feeling so horrible! I cannot offer any advice on this issue but...I just wanted to let you know that I am thinking of you!! I hope you get some relief soon!

[jumpinjiminy]

Thank you. I am having BP issues right now which is the one of the things that prompted my visit. My blood pressure is high, but my pulse is low. I am on a beta blocker - and my BP was always stable for a whole year until my flare started. Now it is getting pretty high with this "hug" and these spasms. I thought I was having chest tightness that you associate with cardiac issues with the BP, but when I spoke to the MS doc Tues morning he was quite sure that it is actually the MS hug since my EKG was normal and my BP has been traditionally stable until the MS started flaring. Now we may use a med to treat the "hug". I have no idea what that is, but it sounded scary.

He was hesitant to add any new drugs considering all my symptoms without seeing me first. I like him, and his approach. I think doctoring over the phone is a bad idea personally. I mean I get that for some things like adjusting a dosage it is fine - and even nessicary. For something like this I just think it would be dangerous. I like my doctor.

Interesting you mention the headaches. I have had a headache for about 2 weeks straight now. I am sure it is a combo tension/bp thing.

I'm glad you have a doc that helps in person. Sounds like you have a gem on your side. With BP issues, yours is a different animal than mine. Mine usually goes the other way. With a flare up, it can go both ways, or one end or the other. Right now, it's high, a first, with what I thought were spasms to start off with, but have now turned out to be gall stones.



Surprise!

Do you get a spring break soon, I hope?

[MadamMarvelJen]

Sasha sorry you are having so much trouble. Did you ever try the homeopathic medicine? The one I take is put out by Heel called "spam-pain". The only prescription meds I'm on are Rebif and gabapentin for the hand/feet tingles.