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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thomasogentry 01/30/2012

I was diagnosed with MG when I was 3 years old. That was 35 years ago. When I was a kid I took Mestinon and Prednisone. These medicaiton did not seem to help the disease and I quit taking it around the time I entered high school. I haven't taken medication since. I also quit seeing a doctor about the disease at this same time. I have symptoms of the disease every day but my symptoms dont seem to be the same that everyone else says they experience and I don't understand why.

I have never had eye droop. I have never had trouble swallowing. When I chew alot such as with tough meat, then my jaw gets tired and I have to quit chewing for a bit. I can not walk at a normal pace continously for more than a half mile before I can no longer stand up. If I sit and rest for 10 to 15 minutes then I can stand and walk that same distance again. If I rest for a shorter interval then the distance that I can walk is shorter. I go to the gym 5 to 6 days a week and work out. I can bench press 245 lbs. I can do pull ups, chinups, squats etc. I feel fatigue when I work out and my muscle fatigue does not recover as quickly as the other guys I work out with but this is not really a hinderance. I just have to rest a little longer. I am a lot strong than a lot of guys in the gym. The fatigue seems to affect on the muscle groups that I am working at that moment and not the others. For example, if it is leg day then I feel the fatigue in the legs and not my arms. I can completely burn out my legs during a work out but by the time I get dressed afterwards I can walk about 98% normal with no problem.

I can not do any cardio work out unless I switch muscles groups during the exercise. I have a special machine that allows me to pedal like a bike and when my legs will no longer move then I can flip the pedals up and use my arms until my legs have recovered. I switch back and forth like this to perform a cardio workout.

Does nayone else experience MG like this?

tesb 01/30/2012

my Mg presents very similarly when in reemission buy when I am very ill I get eye issues swallowing etc they seem to be my last muscles to go. I think we all present differently.

I think you must still take care of yourself

bweeds 01/30/2012

Of the people who have been posting on the site lately, my MG is the most like yours, mild (compared to most) and progressive. I am 65 and have had symptoms almost as long as I can remember, but only have had the eye problems in the last five or six years. I respond very well to Mestinon and prednisone (only been treated for a year) and hope to get back to my more active life style of hiking in the mountains. The MG was beginning to interfere with gardening and reading and eating at night, etc. I am seronegative, diagnosed clinically and SFEMG. My father and his sister both had MG. My aunt's went untreated and was severe and she died at 42 (wheelchair bound at the time). My father's was diagnosed late 70's and was severe at the time of his death at 87. I didn't realize how much MG was interfering in my life until I was treated. The eye problems seem the most persistent despite medication and I don't know if that would have been different had I been treated earlier. b.

DebbieF777 01/30/2012

I have some of the similar symptoms, but my activities seem to do my chest in, and that takes a while to recover. Too much activity and I'm in trouble.

mermaid3 01/30/2012

I am fairly new here too andhave found everyone is effected differently with mg although there are similarties. like you my eyes are fine, my jaw tires when chew mostly meat have to take breaks, and the whole walking scenerio sounds like me. I dont work out but with my housework and taking care of kids my muscles that i am using at the time only last so long then need a break afterwhich i can do some more. Sound similar to me yet you are def in a stronger place and also 15 yrs younger!! Enjoy where you are with mg-- med free! hope it last a long time.

snowbeltfolkie 01/31/2012

Welcome!!
Judging from postings here:
It seems many youngsters, that receive early care for MG: recover decently, and often do well in adult life.
You are fortunate, with that - bless you.
Fortunate, phah. You have taken care of yourself - and that has made all the difference!

There are some young Moms who post here, whose story about their youngsters - is very different.
They are struggling, with very sick children.
The same seems true, with young adults. Some do very well. Some still struggle. Truly - the ''snowflake'' disease.
- Ross

thomasogentry 01/31/2012

I was very sick as a young child. The Prednisone suppressed my immune system and I caught every childhood bug that came along. I missed alot of school back then.

thomasogentry 01/31/2012

Have you guys heard about this possible cure that is in development for MG?

http://www.curavac.com/Welcome.aspx

bweeds 01/31/2012

If you search Discussions for curavac, there is a thread in midAugust.
The discussion was titled "This is getting old" b.

Dizinerd 01/31/2012

Wow, Thomas. Wouldnt it be wonderful if they found a cure! I know I shouldnt get my hopes up, but it's hard not to. I was diagnosed at 14 and am also off any meds. Like you I still feel it, but its very mild. Like I've said before. If I didnt know what it feels like I probably wouldnt even notice. I'm glad its staying at bay for you. Good luck and WELCOME! :)

thomasogentry 02/01/2012

People keep asking me if I'm sure I have MG or if it is something else. I have had a positive tensilon test and have undergone the EMG testing. I cant imagine what else it would be that I have. Does anyone elses MG present their symptoms and recover as quickly as I do? I even had a doctor ask me one time "How can you exercise and have MG?" My response to that was "Your the Doctor, you tell me."

cgreens 02/01/2012

Doesn't sound strange to me that you can exercise, rest a bit and then exercise again. Only that, if in fact your problem is currently MG, your symptoms are not that bad.

thomasogentry 02/01/2012

I have never met or talked with another person who has MG. Until now, I didn't know what others experience with this. Your right, my symptoms aren't that bad. I didn't know that until recently.

mermaid3 02/01/2012

I,myself, and others have had people say to us Mg really ? but you dont look sick. especially when rest alone helps alot. hard to describe what i actually feel like inside. hindsight.. i probably hadthis many years but symptoms weren't that bad...and again thanks to rest. just attributed it to getting older and having kids to keep up with. it wasnt until last year or two when arms and legs and throat stopped working. still sounds like you at good place yet with mg, which does happen.

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