26 years ago I've gone through the tyhemoctomy having much thymus glad removed to eliminate the effect of mysatinia gravis here I am 26 years later and finding myself going through it again my eye is completely closed now with no muscle at all I've been prescribed mestinon to elevate the effects of my eye muscle but to no avail they are making no difference at all catscan scheduled in few days to see if by any chance the thymus has regrow at a complete loss as what can be done if the thymus has or has not regrow my life is now at a standstill I cannot work or drive if there is anyone with some positive feedback I cold sure use it right now

When I started taking mestinon it gave me awful stomach cramps I worked out if I took it with milk and do not eat food half an hour before or after taking then I was ok also try and sit still after taking don't bend down too much etc if I do it gives me acid indigestion. It works for me hopefully it might help you a little too

I find mestinon takes about half an hour to work and lasts 3 maybe 4 hours and some days it works better than others and sometimes when it wears out the fatigue hits you like a brick wall!!

I was put on Keppera the first of December. Within two weeks my eyelid in my left eye started drooping and I started noticing double vision. I was seen by an Optometrist and tested out to have 3 Diopters of Vertical prism. When I returned to my neurologist and complained about my double vision and eye drooping he ran teat on me thinking I had Myasthenia gravis. The blood test came back negative. He said he still believed that I had MG and put me on an additional medication to treat MG. That was three weeks ago. The new medication is not helping or improving. I went to see a Ophthalmologist and My prism is now over 6 diopters. My doctor swears it could not be the Keppra and refuses to take me off of it.. I really feel it is the Keppera. Just a feeling Any advise?

I'm new on here and don't know how to start i have just been diagnosed with this rate condition Myasthenia gravis my neurologist is not much good to be honest , I have had a number of tests to find out that I MAY have this condition , I also suffer from dizziness ,feeling tired and want to sleep all the time I can have a good night sleep but wake up as I have had no sleep at all .
I also suffer from NF 1 and have had Neurendocirine cancer 2 times you can say I'm a walking medical book for doctors .

I need as much help as I can get on Myasthenia gravis so if anyone can help I would be grateful .

Hi The Chef

Welcome to NeuroTalk .

Myasthenia Gravis is an autoimmune disease. That means that your immune system recognises normal body proteins as being foreign in a way which is similar to if you have a bacterial or viral infection.

The specific normal body proteins which are involved in Myasthenia Gravis are naturally found at neuromuscular junctions. Two of these are the acetylcholine receptor and the MuSK protein.

There is some general information about Myasthenia Gravis here Myasthenia Gravis Fact Sheet | National Institute of Neurological Disorders and Stroke .

This forum is very active. Its "Sticky" threads are worth reading and also if you share your story there you will get support and good ideas from other members.

All the best.
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Stellatem I am trying to locate some one who has actually been diagnosed with Lems. I was diagnosed 9 months ago and so far have not been able to locate anyone else in Australia despite lots of people trying for me. Many thanks.

My wife made me do it.... she placed this forum on my favorites page and told me I should read... I have had double vision for 19 months. Saw opto, opto neuro and then neurologist. I examined and found nothing wrong. In discussion before leaving his office, he gave scrip for Mestinon. IT WORKED. Life was getting better... until some weaknesses began last year. Went back to neuro. He did tests, tests, tests. All came back normal. Passed me off to an associate who gave me a half-assed examination and said it was all psychosomatic. Nice... I figured myself to be a nutcase and decided to endure.
My endurance has failed me more and more. Weakness in arms, legs. Swallowing issues increasing. Got Mestinon and it works, for awhile. Have to drive home at end of day with one eye closed.
As I read, I feel like I am not only one in this situation. Still, not really wanting to go back to a Dr. and have him tell me I am imagining all of this. Unfortunately, it is a drag. My loving wife is supportive but I hate having to lean...
Thanks for listening. Glad I am not alone, even if nothing else comes of it.

Hi All....I appreciate this opportunity to be able to join this forum for some of your input on maybe what is going on with my husband. Back in Aug., his back starting hurting him (lower back on side), bad enough so that he couldn't take our nighlty walks-couldn't walk even a 1/2 a block! So he went to a chiropracter for an adjustment, which was fine until the next day, severe shoulder pain! As time went on he started to lose weight, for no reason, about 35-40 pounds worth since Dec. or so. Then his neck starting hurting too & I noticed that his gait was somewhat off when he walked. When he walked, his neck & shoulder pain was & is pretty bad....then the fatique set in! So he had an upper & lower MRI which showed that he had "arthritis" around C2-C3. Pain tx. sessions were set up with shots, but due to an UTI, he couldn't go through with it. His pain specialist put his tx. off until he took further tests to see what was going on with him (that was after I insisted in him watching my husband walk down the hall re. his gait-it is painful to see him struggle due to the pain. When he is seated or laying down, he is fine! As time went on (Dec.), he had to have 3 rounds of anti-biotics before it went away! Then I noticed a change in his voice...more hoarse sounding in the morning, then got better....now it is hoarse sounding most of the day.
So here we are today....a total of 3 MRI's-including the brain, 3 cat-scans (from neck-abdomen), colonoscopy, chest x-ray, all sorts of blood work, and I think that is it. Tomorrow we are going to see the ENT for a scope test to look at his vocal chords. So here is my question....does any of this sound familiar to anyone as far as any significant symptoms of a disorder? He hasn't worked since early Dec. and is beginning to go stir crazy! He is 57 years old & such a hard worker, this is so hard on him sitting around the house waiting to see why he is feeling this way! I have thought of everything from cancer, to ALS, MG, MS. We are strongly considering going to Barnes! Any thoughts & comments would be appreciated....I think not knowing is worse then knowing, at least you have something to start with! Thanks all, Cathy

Cathy,

I moved your post to its own thread in the main forum, where it has some replies. If you go to http://neurotalk.psychcentral.com/forum77.html you will see all the topics being discussed. The thread entitled "Does any of this sound like MG" is yours.

Abby