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...

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MG and lower body

bear57
bear57
I have been having some issues with my legs cramping some and feeling weak. I am walking down the hallway at work like I am losing balance or bumping into the wall and have to take my time going down the stairs. So far this year have been checked for prostate cancer and had my gall bladder tested all was normal family doctor thought that might have something to do with it. Also have talked to my neurologist but they have mentioned ear infection or a virus. I have read that MG can take a few years to get to its worst and I have had it going on three years. Was wondering if some of you that have had it a while had experienced any of these things. I go back to my neurologist next week and to my family doctor the following week just would like some ideas what to say and how to tell them. Getting a little tired of them telling me about a virus or ear infection. I am on 2000 mg of cellcept and 180 mg a day of mestinon I also realize it could be medication but I have been on these a while and this has been going on since the first of the year and seems to me getting worse. Thank you for any suggestions or advice on how to approach my doctors when we meet again. There is so much MG can do it is sometimes hard for me to explain so they understand and then they tell you doesn't sound like something MG would do that makes me laugh.
deleted_user
deleted_user
I startws out in January having exttreme fatigue, next 1 of my eyes closed for a few weeks, then had double vision. Had to wear a patch for awhile then the eye started opening but the right eye closed. Dr put me on large does of prednisone and my eyes cleared up. Then I started losing my balance like running into walls, ect. Am on mestinone and many other drugs. I cant drive or walk very far. My Dr found it by taking blood and told the lab to run a test for MG. It came back positive.
SeattleWriter
SeattleWriter
I have had MG for several years now, and I have difficulty with weakness in my legs. I use a cane when I need to do a lot of walking or standing, because my legs have a certain Jello-like behavior if I push too far, and falling is an issue. As I understand it, arm and leg weakness is a sign of progression.
limpnoodle
limpnoodle
I have those problems but have Lems. I walk like a drunk and bump into things. Basically, my muscles, the ones I have left, are uncoordinated and when I am headed in one direction, I may or may not go that way. I use a cane when I go outside, or walk anywhere other than inside the house.
Are you seropositive for mg? Have you been checked for Lems?
ray2me
ray2me
Hi Bear , what you are describing is what MG is . When muscle groups are used repeatedly acetylcholine is used to make the muscles move . With our autoimmune disorder the acetylcholine is blocked so muscles do not operate properly and are fatigued .In other words with mg it's the more you use it -- the more you use it . There is a great article on this on - women with mg . org . Be carefull trying to push yourself to hard because it can go after your diaphram making it hard to breath. When it effects your legs it is called generalized mg . I have the same problem . I can not walk very far or stand for long anymore . You may want to check into a differant Neuro , but at least sit as much as possible and rest as much as possible. Good luck, Charlie
MGOhio
MGOhio
My legs got worse when I was taking too much Mestinon, and I had to back-off some. You certainly don't appear to be at that level. Also, like Charlie said, you are describing what is the progression of MG into Generalized.

I also have what I believe is some "deconditioning" in my muscles going on (as described in another current thread on this wonderful site). I've been doing some short-and-sweet weight/strength training to help maintain my muscles to some degree (believe me it's not some knockout exercise session, just about 10mins of leg presses and curls, 70 pounds). Seems to have helped some.

On that note, I've read somewhere that once you hit your 30's or 40's, you start to lose muscle mass (1% per year??) even if you are semi-active. With this natural phenomena, in addition to the effects of MG (I'm a couch rat}, I can't help but believe that contributes to our leg weakness even more.

Take Care.
MGOhio
MGOhio
Additionally, for me the weakness in my legs is certainly an uncomfortable and unnatural sensation. I have grown to get used to it over the past 2 years, but I always know it's there. Luckily I am not at the point yet where I fall/trip, but definitely am unstable when I first get up, especially during the night or first thing in the morning until I get my "bearings". I think my jacked-up eyes also contribute to some balance issues (Google "Jack Elam" for a smile !)
deleted_user
deleted_user
Sometimes my lower legs feel as though I had been riding a bike and are shaky and weak. You symptoms warrant a conversation with neuro since they imply progression to generalized MG. Hugs.
skidoomt
skidoomt
Bear..I have had the leg weakness anf gait issues. When MG is worse I drag my right leg. Take a log of your symptoms. .that might help. Hope you get relief. Thinking of you.
bweeds
bweeds
Bear,
A journal of symptoms can surely help and I have the wobbly legs in the night and morning--if I am not ready to use the walls and door frames, I take my first pyridostigmine before I get out of bed. I also take six or seven more during the next 24 hours. With that I do Tai Chi and/or gardening most days, although recently have had more troubles-- trying to taper the prednisone.

It is not helpful for doctors to tell you what they don't believe you have (often without examination).

People, including doctors, believe and don't believe a lot of things. They need to tell you what supports their conclusions and what other information they or your other doctors might need, and get you to feeling better. You might also ask if you could increase your dose of pyridostigmine while waiting for the CellCept to kick in. (Sometimes, I would like to kick in things--hang in there--b. )