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...
Firstly I want to say a BIG thank you to everyone who replied to my last post - Samiwells (your post literally made ma laugh out loud!) Annkemp, Elinora, Luvspringers, bweeds, bruceyelverton and Barbel - you are all such a huge comfort and a fountain of knowledge not just on my posts but many others I read - so thank you all for your help and advice.
I returned to my neuro yesterday after trying to remain as active as possible all day, I wasn't quite as bad as I would have liked to have been but bad enough that my legs literally shook whenever I tried to lift them. After another examination - he asked me to walk and then did a resistance test once on each limb, no repetition - he said I have a "Functional problem between the nerves and the muscles where they are not working properly" He said my muscles were strong despite my legs shaking as I lifted them from the bed just once. He said that I cannot have Myasthenia because "You don't walk like one"???I admit my walk is weird right now - I tend to swing my hips and feel more comfortable with my bottom out and legs straight with a bit of a limp going on!! But when I try to walk normally my legs feel like they are going to give way and as soon as I stop concentrating on walking normally my body reverts to this strange walk when my legs start to tire - morning walking is definitely better than later in the day!!
Another point is that he also said my face is pulling not drooping which to a degree I agree with - in the morning it is a drop on my top lip which doesn't move when I talk as it should and as I continue to go about my day talking, eating etc the muscles of my chin intermittently go into this spasm and pull - has anyone come across this at all??
He has completely refused to do any more testing saying he hopes a virus set it off and it will go away on its own? He hasn't addressed my shaking leg muscles, eye drop, the dramatic improvement on the photos I sent of the ice pack test, my chest pressure/breathing problems or my weaker neck and arms - I think he had just made his mind up.
On the plus side - it is a completely different diagnosis than the one he gave me 9 years ago for the same problem! Chronic Fatigue with Psychological Problems was not mentioned and he said he didn't feel this was stress related more likely a virus??
So.....I am at the point where I contemplate my next move - do I pursue this area or accept his diagnosis (Whatever it means!) The one side of me thinks he is respected and knows his job and has no doubt discounted is for valid reasons but on the other he has given me no answers, he admits that an AChR test is not conclusive and I know Myasthenia has not been ruled out here. I know how I feel and everything I have read about what I experience points me here although I accept if it is the answer it is maybe a milder form of Myasthenia?
Thanks again to you all - I would be so grateful for any advice. x
I returned to my neuro yesterday after trying to remain as active as possible all day, I wasn't quite as bad as I would have liked to have been but bad enough that my legs literally shook whenever I tried to lift them. After another examination - he asked me to walk and then did a resistance test once on each limb, no repetition - he said I have a "Functional problem between the nerves and the muscles where they are not working properly" He said my muscles were strong despite my legs shaking as I lifted them from the bed just once. He said that I cannot have Myasthenia because "You don't walk like one"???I admit my walk is weird right now - I tend to swing my hips and feel more comfortable with my bottom out and legs straight with a bit of a limp going on!! But when I try to walk normally my legs feel like they are going to give way and as soon as I stop concentrating on walking normally my body reverts to this strange walk when my legs start to tire - morning walking is definitely better than later in the day!!
Another point is that he also said my face is pulling not drooping which to a degree I agree with - in the morning it is a drop on my top lip which doesn't move when I talk as it should and as I continue to go about my day talking, eating etc the muscles of my chin intermittently go into this spasm and pull - has anyone come across this at all??
He has completely refused to do any more testing saying he hopes a virus set it off and it will go away on its own? He hasn't addressed my shaking leg muscles, eye drop, the dramatic improvement on the photos I sent of the ice pack test, my chest pressure/breathing problems or my weaker neck and arms - I think he had just made his mind up.
On the plus side - it is a completely different diagnosis than the one he gave me 9 years ago for the same problem! Chronic Fatigue with Psychological Problems was not mentioned and he said he didn't feel this was stress related more likely a virus??
So.....I am at the point where I contemplate my next move - do I pursue this area or accept his diagnosis (Whatever it means!) The one side of me thinks he is respected and knows his job and has no doubt discounted is for valid reasons but on the other he has given me no answers, he admits that an AChR test is not conclusive and I know Myasthenia has not been ruled out here. I know how I feel and everything I have read about what I experience points me here although I accept if it is the answer it is maybe a milder form of Myasthenia?
Thanks again to you all - I would be so grateful for any advice. x
Secondly....have you ever gotten a second opinion?
Ann
I question his comment about how mg patients walk.
We are all so different. I bet I have walked every humanly way possible.
At one point not at all to perfectly.
Ann
Eve.