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!
Annette
No burning, twitching either!
I do remember the nasty cramps I got when I was taking a lot of mestinon though...OUCH
I had a got train of thought on this as it pertained to MG many moons ago if someone can find the topic header.
I feel for those with CFS for sure!
I can sympathize with you, because I have been having them every day. I am thankful for the medication I got to help, otherwise I wouldn't be sleeping either.
It is the weather? Our weather here changes from 80 degrees to 40 and rainy just about every other day. I have never seen such extremes in years past. Who knows, but it seems more and more of us are having them.