Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Many of you have probably read where Ross has mentioned CFS (Cramp Fasciculation Syndrome) also known as Peripheral Nerve Hyperexcitability. I am bringing this up, because of what has been happening with me. Just like MG each person may not have all the symptoms and may vary.
Many of us have talked about muscle cramps, twitching, burning, tingling, pain, and fatigue. I have had all the above, but have passed it off to being part of MG until this week. On occasion I have had excessive sweating, which I thought was due to Mestinon.
Monday, I went outside to pull some weeds and had been drinking plenty of liquids. After working a while I came in to take a shower and in the middle of it my whole body started to cramp with my hands being the worst. Fingers stiffened and they all started to bend at the joints connect to my hands towards to the palm of my hand. It felt as if my joints were going to just pop and the pain was so bad I could hardly stand it. Try bending your fingers to the palm of your hand without bending the first two knuckles in your fingers. You can't do it, but this is what was happening.
The only thing to relieve the pain was to stop them from going towards the palm of my hand. Long story short I got them to quit except for the middle finger on my left hand. Don't know if it was from the cramping or from me trying to get it to quit, but it was dislocated and I had to go in and have it put back in place. It bruised right away and swelled.
Yesterday, I went in again to the doctors and my electrolytes and potassium levels were fine. The doctor talked about CFS. It has similar clinical symptoms and EMG findings and associations with other immune disorders, most noteably MG. This is what they are considering, Since muscle relaxers are to be used with caution in Mgers, he has prescribed Ativan which is an anxiety medication to help relax the muscles.
This is something we all need to be aware of and not pass everything off to MG. Here is a website if you want to do some reading:
http://pnhinfo.com/
It has not been confirmed yet. The test is an EMG, but like MG the results can be negative and yet symptoms are consistant with CFS.
Food for thought everyone!
Many of us have talked about muscle cramps, twitching, burning, tingling, pain, and fatigue. I have had all the above, but have passed it off to being part of MG until this week. On occasion I have had excessive sweating, which I thought was due to Mestinon.
Monday, I went outside to pull some weeds and had been drinking plenty of liquids. After working a while I came in to take a shower and in the middle of it my whole body started to cramp with my hands being the worst. Fingers stiffened and they all started to bend at the joints connect to my hands towards to the palm of my hand. It felt as if my joints were going to just pop and the pain was so bad I could hardly stand it. Try bending your fingers to the palm of your hand without bending the first two knuckles in your fingers. You can't do it, but this is what was happening.
The only thing to relieve the pain was to stop them from going towards the palm of my hand. Long story short I got them to quit except for the middle finger on my left hand. Don't know if it was from the cramping or from me trying to get it to quit, but it was dislocated and I had to go in and have it put back in place. It bruised right away and swelled.
Yesterday, I went in again to the doctors and my electrolytes and potassium levels were fine. The doctor talked about CFS. It has similar clinical symptoms and EMG findings and associations with other immune disorders, most noteably MG. This is what they are considering, Since muscle relaxers are to be used with caution in Mgers, he has prescribed Ativan which is an anxiety medication to help relax the muscles.
This is something we all need to be aware of and not pass everything off to MG. Here is a website if you want to do some reading:
http://pnhinfo.com/
It has not been confirmed yet. The test is an EMG, but like MG the results can be negative and yet symptoms are consistant with CFS.
Food for thought everyone!
I have these exact symptoms ALL THE TIME and my electrolytes are fine. A month ago, my right calf muscle nearly tore itself apart during a cramping event and left me almost unable to walk for a week, bruised and in pain for nearly three weeks. My hands cramp, just like yours, and I too just try to straighten them out as you do. If I'm in the company of a friend, I ask them to grab it and open it up. Makes a cute parlor trick, in a sick sort of way.
I have been having same symptoms but not to your extent. Strange you brought up sweating. I have been having some unexplained excessive sweating out of the blue. You are right, I think we are so used to having such a wide array of symptoms we tend to pass it off as mg or med side effects. The constant twitching and cramps can be so exhausting.
Hope you get an answer soon so you can treat it.
Hugs
Sherry
Sorry to hear Curt and Sherry that you both are having the same problems. Another similarity we Mgers have, but the question is whether it is MG or something else. Yes, Curt I agree it would have been nice if I had someone to help me with my fingers and maybe I wouldn't have dislocated the one.
I just got my prescription and they are giving me Lorazepam (generic for Ativan) just in case it gets that bad again. They told me absolutely not to take Ibuprofen.
Cathy, I hope you get some relief from it soon.
Thanks again for sharing this information....
Amy
I didn't finish that last paragraph. It wasn't intended for everyone. Being on prednisone and low dose asprin, I am bruising way to much. They told me that Ibuprofen will make that worse, which is something I didn't know. This came from both my regalar doctor and from my MG neurologist. You are probably okay with taking it.
Take care,
Rhonda
Take care,
Rhonda
With my worst episode, I took Mestinon an hour early early , tylenol , clclonazepam (.5 mg a bit more than I usually take for restless legs which I have had for many years) and drank about 7 ounces of coconut juice straight. I was covering all the bases! It was bedtime and I was cramping in arms, hand, sides,and legs and as you said it can be pretty scary. Everything I moved except my head would start to catch. Toes were the worst. Limped to bed, lay absolutely still and went to sleep. I was OK in the morning.
I think it is hard for doctors to tell us what causes these things unless they catch us when we are having the problem. I think it will just take better understanding of the NMJ and MG. I don't think they understand how common the problem is or how related to medication or the lack of and what the electrolytes are since they can change from the time of the attack to when they are drawn.
In general I think the more stable the blood levels of Mestinon in those of us who do not have one of the PNH syndromes, the more stable the blood potasssium, and the more reasonable expectations of our bodies is all we have to work with. But if we all bring it up with our docs, maybe someone will be able to explain it or at least bring it to more attention. b.
Sometimes I think it is the change in the weather that makes things worse. It rained all day long.
Keep those pills handy.
love,
jeannie
seeing my neuro, about a swallowing problem.
i asked the neuro, about this subject of CFS.
he said, he has other MG patients, with CFS or other PNH-syndromes. (i am 1 of those CFS patients.)
mainly: cramp-fasciculations, affecting feet and legs, hands and arms.
Cathy's experience is very similar to my own.
and there are some others here, in our support group -
- who have similar chronic (daily) symptoms -
- seemingly not related to mestinon or other prescriptions.
SPS, or stiff-person syndrome: is another PNH-syndrome, you sometimes hear about. SPS and CFS - are close cousins.
my dear friends: don't automatically dismiss your cramping, or related problems - ''as just MG''.
it may be a PNH-syndrome.
- ross
ps: sorry for lousy typing.
i am typing one-handed for awhile.
left-arm: out of action.
because i believe it's important, for some of us here (not all).
i especially want the LV attendees to see it, as it happened while they were gone.
And Cathy did a beautiful job of writing it all up.
even tho' she was in terrible pain.
- ross
This past weekend, I went off with my riding buddies on a camping weekend up in Vermont/NH. Both nights I had pretty bad cramping in my legs and had to get up about every hour, just to move around until they went away.
Yesterday, I got home at about 2pm, brought my camping gear in, took a bath and went straight to bed. I was exhausted from battling the elements all weekend. I fell asleep at about 5 and, for the most part, spent the rest of the night in bed, sleeping or dozing, except for one thing: Horrible leg cramps.
The cramps were so bad as to be totally debilitating. They would come at about hourly intervals and would involve a different muscle each time. At one point, I had a cramp in my right shin. There isn't even a muscle in the shin. It's just skin on top of bone! I had been drinking plenty of fluids and drank Gatorade.
While this happened after a fairly strenuous weekend, I get cramps for NO reason now and it's getting so frustrating. Not only are they horrificaly painful, they are now lasting longer each time a muscle goes into spasm and I am having far more events each night. This causes tremendous stress and loss of sleep. I really don't know what to do. I feel like I can no longer enjoy my life. My docs are clueless as what to do about it so I guess I'll do the only thing I can: Complain.
Curt