[momma3love]

I just wondered if anyone else has some of these symptoms. I have been assuming its the MG but I could be wrong. I have really bad muscle cramps. The more weak I am the more I have and I get them everywhere. Even in my fingers. My legs are the worst. Its not exactly like a charlie horse, tho I get tons of those. My muscles just tense really bad and spasm like crazy. It is very hard and painful to move. I have to walk weird to get anywhere.

Also does anyone ever seem to take as much mestinon as allowed and it just does not seem to help? I have had a sorta dx for 5 years but just got the official one a few months ago. I have been struggling bad since my thymectomy, and they only want to put me on Imuran. I was really hoping for IVIG. Especially since rest and mestinon is not helping. They dont want to put me on pred, besides I refuse that stuff. I do not tolerate it well, its some weird genetic thing. My mom and grandma cant tolerate it either.

Anyway just curious about all that. Thanks for any input. Hope everyone is having a positive day today.

[TxSimon]

Originally Posted by momma3love

I just wondered if anyone else has some of these symptoms. I have been assuming its the MG but I could be wrong. I have really bad muscle cramps. The more weak I am the more I have and I get them everywhere. Even in my fingers. My legs are the worst. Its not exactly like a charlie horse, tho I get tons of those. My muscles just tense really bad and spasm like crazy. It is very hard and painful to move. I have to walk weird to get anywhere.

Also does anyone ever seem to take as much mestinon as allowed and it just does not seem to help? I have had a sorta dx for 5 years but just got the official one a few months ago. I have been struggling bad since my thymectomy, and they only want to put me on Imuran. I was really hoping for IVIG. Especially since rest and mestinon is not helping. They dont want to put me on pred, besides I refuse that stuff. I do not tolerate it well, its some weird genetic thing. My mom and grandma cant tolerate it either.

Anyway just curious about all that. Thanks for any input. Hope everyone is having a positive day today.

Funny that you mention your spasms and muscle cramps. I have had severe spasms and cramps since I started on mestinon. They are all over my body and no explanation or reason as to when and where they might happen on me. Sometimes I can't even sleep due to the spasms. Laying down seems to make them worse with me. I seem to have them more after IVIG treatments, which I just had last Monday and Tuesday. I am even having twitching of my eyes, which is about to drive me crazy! I wish I knew how to control them, but I have asked and my neuro has just told me that he can't control that. Life goes on and I just make the best of it! Hope you have a great week.
Simon

[Pat 110]

I often get cramping in my leggs after I take mestinon and almost always get the twitching in my eyes after taking it. I sometimes get a host of side effects and can only take for 3 days at a time. Hope you find out what's causing it. Take care.
Pat

[Joanmarie63]

Hi there, I can't say what is causing this problem but I can say that I too have a bit of this problem and I don't take any medication because I react badly to it all. Maybe it is a part of the MG after all, I have learned a lot from this site since I was Dx'ed 18 years ago, many things that are MG related they told me years ago wasn't so keep telling us things that are happening and maybe some of us won't feel so "dumb" about what we are feeling.

[Tbarney]

I react similar to what Simon posted. It is worse when I lie down. I sometimes have to get up and walk off the cramps while I am in bed. Or if I strectch, I sometimes get them. I get cramps bad in my toes, so it is hard to walk when I have them. I also get charlie horses in my ribs, which make it hard to breathe.

[Pat 110]

Simon, I know what you mean about the twitching of the eyes. As I said, I get that from the mestinon. However, not long ago I was not taking any mestinon and my left eye was twitching non stop for weeks and it was driving me nuts. I saw my neuro ophthalmologist and she said she could stop it by injecting botox in the muscle that was causing it or I could just wait it out. A needle in my eye did not sound very appealing so I chose to wait it out. It did finally stop about a week or so later. I've had it happen a few more times, but only for days not weeks. She did say it was due to the MG. Hope yours gets better soon.
Hugs,
Pat

[xmas 25]

i satrted an upward tpaering of mestinon which ended up with the twitching of arms, eyes face lips and stomach [so much i'd toss my cookies] so dr put me on timed released seems to be much better than before but i'd be fine for 5 days then have the heebie jeebies for 1 day who the #### knows?

[Nicknerd]

I've been having bad cramps on and off, mainly in calves and bridges of feet, since I was about 14....It would just be a momentary thing, so I have never really addressed it with my doc.. When my MG symptoms started to get really had, though, (Slurred/nasal speech, shortness of breath), I started getting really bad twitching in my fingers, mainly on my left hand...My middle, ring and index fingers twitch uncontrollably if I extend them. I also have hand weakness...This is all before mestinon, mind you....So it's definately NOT from that....I also have a lot of swelling in my hands too (not sure if related)...Anyway, I brought it up to my thoracic surgeon...He mentioned that having thymic abnormalities (thymoma/hyperplasia) can sometimes cause symptoms like these...When I did a bit of research on it, I came up with some 'overlap' syndromes that can occur with MG and especially MG with thymoma. The main ones I came across were neuromyotonia, cramp-fasciculation and Morvan's syndrome (which might be the same as cramp-fasciculation)...

One thing that I find helps, and I'm not sure if this might apply to any of you guys, is I smoke (which is really really bad, I know :S *embarassed*) and drink a lot of caffeinated drinks. If I don't smoke and don't have these beverages for a couple of weeks, the cramps/fascits aren't as bad and almost disappear...I also drink a lot of milk and water which seems to help...I think it might have to do with stimulants for me and inbalance of electrolytes...and oh yeah, a crazy immune system! lol

[TxSimon]

Originally Posted by Pat 110

Simon, I know what you mean about the twitching of the eyes. As I said, I get that from the mestinon. However, not long ago I was not taking any mestinon and my left eye was twitching non stop for weeks and it was driving me nuts. I saw my neuro ophthalmologist and she said she could stop it by injecting botox in the muscle that was causing it or I could just wait it out. A needle in my eye did not sound very appealing so I chose to wait it out. It did finally stop about a week or so later. I've had it happen a few more times, but only for days not weeks. She did say it was due to the MG. Hope yours gets better soon.
Hugs,
Pat

Pat,
Thanks for the reply. I am typing.....well trying to type....between twitches.....and blury eyes! I agree with NO injections anywhere close to my eyes! Ouch! Thanks for the response.......knowing it is not just me helps. Have a great day!
Hugs galore!
Simon

[ras1256]

Hi Guys! Sorry you're all spazing out! LOL - I know that's not funny, but I've been there too! Some things to keep in mind.

1- Botox is a NO-NO with MG, so I'm glad you refused that needle Pat.
2 - Simon, if your's get worse after IVIG, I would certainly suspect a Mestinon overdose during that time. Same with you, Xmas, and you too Nick.

Xmas, if it got worse on a upward tapering of Mestinon, I would say you had hit your level just before the cramps, etc. got worse.

Nick, cigarettes and coffee (I partake of both too!) both have the same effect as Mestinon, believe it or not. I found that through posts by Mrs d and Annie on this forum. I had been self medicating myself for years. If your twitching gets better when you back off the coffee and cigs, it's probably relieving an overdose of acetylcholine.

All of you that notice it getting worse on the Mestinon, particularly if you notice increased perspiring, may want to check with your neuro about adjusting your dosages. Too much acetylcholine causes a cholinaterase crisis, which is the same symptom-wise as not enough. Obviously, though the treatment is the opposite.

It's very tricky when you have been given a set dosing schedule, because there are foods (nightshade family - nicotine is the strongest of this group but it includes peppers and others I can't think of right now) that can affect your levels, and Myasthenia fluctuates, and even fluctuates within those fluctuations. You may have a very bad month with some weeks or days within that month being worse than others. It can even fluctuate from hour to hour.

My docs have allowed me to adjust my doses myself according to how I feel. Sometimes I take 30 mgs, then 5 hours later need 60, etc. Some days I can go with none. As you get more familiar with your MG, you will get to where you can do this as well, I'm sure, but for newbies you should definately discuss any of those adjustments with your doc.

I have noticed twitches and cramps when not on the Mestinon at all however. I always attributed it to my overlap and/or BAD neck, but..........HMMM

Hope you all can settle those muscles down a bit! It's the pits being spazzy, I know!