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...
Reading Judith's thread on neck pain prompted me to throw this out for comments.
I have back pain that I am beginning to suspect is due to muscle weakness caused by MG. Nothing shows up on X-rays, except for normal wear and tear for a guy my age, which is 71.
When I first moved here (from Colorado to Alabama), about seven years ago, I really thought I was going to die before we could get cleaned up, packed up and moved. My back was killing me, I was continually worn out, and I didn't know that I had MG or autonomic failure at the time. I just knew that I could only do a tiny bit of work and had to rest for a long time to recover enough to do some more, and I knew that I had very low blood pressure. That was before I was taking any medicine at all.
The pain used to be only in the 5th lumbar region, and that may have been from an injury. Now my whole back hurts from just under my shoulders and down. It can start from handing heavy things or doing practically nothing, like just sitting at my computer for a long time. Motions like shoveling and vacuuming seem to be particularly bad.
The really strange thing is that if I very slowly slide down some carpeted stairs, gently rocking back and forth on each vertebrae, or slide down the back a low backed chair, I can pop it anywhere from three to seven times. I then get a few seconds of light-headedness and then my back feels fine. Then I can carry on working for a while. When doing something like vacuuming the whole house, I can do one or two rooms, go to the chair and pop myself back into shape, rest a few minutes, then do another room or two. When I finish, I have one last session with the chair and I can carry on to do something else. That is what makes me think that it might be muscle weakness due to MG.
Another thing that I do to get relief in the 4th and 5th lumbar area is to sit on a low chair (the toilet is a perfect height) and lean forward, putting my arms in front of my knees and slowly stretch, sliding my arms down until my knees are just about in my arm-pits and my back is stretched. Then I bring my hands up and hold my head so that the weight of it stretches my neck a little bit. After about five to fifteen seconds in this stretched position my back will pop three or four times in the 5th lumbar area and sometimes higher up as well. I think that it is ligaments moving. Anyway, that also takes all the pain away.
I used to go to a chiropractor to get snapped back into shape, especially for the 5th lumbar pain, but now I can do it myself most of the time. I still go about once a month for a tune-up, but he says that I am much improved.
Does anyone else get bad back pain and, especially, are you able to get relief by doing something weird like I do?
I have back pain that I am beginning to suspect is due to muscle weakness caused by MG. Nothing shows up on X-rays, except for normal wear and tear for a guy my age, which is 71.
When I first moved here (from Colorado to Alabama), about seven years ago, I really thought I was going to die before we could get cleaned up, packed up and moved. My back was killing me, I was continually worn out, and I didn't know that I had MG or autonomic failure at the time. I just knew that I could only do a tiny bit of work and had to rest for a long time to recover enough to do some more, and I knew that I had very low blood pressure. That was before I was taking any medicine at all.
The pain used to be only in the 5th lumbar region, and that may have been from an injury. Now my whole back hurts from just under my shoulders and down. It can start from handing heavy things or doing practically nothing, like just sitting at my computer for a long time. Motions like shoveling and vacuuming seem to be particularly bad.
The really strange thing is that if I very slowly slide down some carpeted stairs, gently rocking back and forth on each vertebrae, or slide down the back a low backed chair, I can pop it anywhere from three to seven times. I then get a few seconds of light-headedness and then my back feels fine. Then I can carry on working for a while. When doing something like vacuuming the whole house, I can do one or two rooms, go to the chair and pop myself back into shape, rest a few minutes, then do another room or two. When I finish, I have one last session with the chair and I can carry on to do something else. That is what makes me think that it might be muscle weakness due to MG.
Another thing that I do to get relief in the 4th and 5th lumbar area is to sit on a low chair (the toilet is a perfect height) and lean forward, putting my arms in front of my knees and slowly stretch, sliding my arms down until my knees are just about in my arm-pits and my back is stretched. Then I bring my hands up and hold my head so that the weight of it stretches my neck a little bit. After about five to fifteen seconds in this stretched position my back will pop three or four times in the 5th lumbar area and sometimes higher up as well. I think that it is ligaments moving. Anyway, that also takes all the pain away.
I used to go to a chiropractor to get snapped back into shape, especially for the 5th lumbar pain, but now I can do it myself most of the time. I still go about once a month for a tune-up, but he says that I am much improved.
Does anyone else get bad back pain and, especially, are you able to get relief by doing something weird like I do?
I shared this with my neurologist and she confirmed that the muscle weakness with MG allows for unsupported joints resulting in pain and eventually if not treated premature wear and tear of the affected joints.
Joe
Mary
I also have very low blood pressure, which was detected about ten years ago. It came on suddenly and still persists, but is much improved with Midodrine.
I also have an enlarged thymus and I wonder if that might have been caused by a motorcycle wreck, when I ran into the back of a gravel truck and cracked my breast bone. I was in the army and at that time they told us that we were GIs, GI meant "government issue" and if we damaged our body we would be charged with damaging government property. We didn't report any medical problems that we thought we could survive, so it was never X-rayed or examined.
I didn't find out about my thymus until last year when I was in the study at Vanderbilt and I didn't remember the motorcycle accident 50 years ago while I was up there, so I didn't ask if it could have been caused by an injury. They said it wasn't bad enough to operate. I don't yet know if an enlarged thymus causes MG, exacerbates MG, or is a symptom of MG.
Anyway, I'm learning a lot on this support group and appreciate all of the comments and threads.
Tom
You really want acat scan for that thymus.. It can spread beyond the walls, and then it's moretreatment .. I had a thymectomy a year ago. I've been told it should help my symptoms within 2 years. One down, one to go.
Be well,