Diagnosis question..
 

Have been suffering from breathing problems for 4 years now,despite seeing every specialist possible there is still no diagnosis.I have bern hospitalized dozens of times and no one has been able to confirm a diagnosis other than greatly reduced pulmonary function tests.

Having recently contacted MGA Ireland (have been doing alot of online research) and recieving an info pack I found that MG would seem to explain all my symptoms..breathing that gets weaker as the day goes on,inability to swallow half-way through a meal, very weak neck muscles,clumsiness/weakness in hands/legs during bad episodes.

I want to go to my doc and ask to be tested but I have been through so many examinations/
tests that she seems to be loosing interest in my case.The question I wanted to ask is weather it is possible to have Myasthenia Gravis without characteristic "drooping eye" symptom? The one symptom I don't seem to have..any help would be greatly appreciated.

Hi. I'm so sorry you're going through this.

I am diagnosed with MG, and I've never had drooping eyelids. I'm not the only one here like that.

I tested negative for the antibodies (a blood test). That seems to be quite common. After that, my doctor lost interest in my case, and I asked him if he could recommend another doctor--a specialist in diagnosing neuromuscular diseases. He sent me to a doctor in Boston who diagnosed me with MG. Don't be afraid to ask. I think that a doctor who has nothing more to offer is often more than happy to send you to someone else. If you're near Boston, or would be willing to travel, the MG specialist there is David Weinberg (in Brighton, Massachusetts). He does a special kind of test, a stimulated SFEMG, that most neurologists don't do.

Abby

If you think you have MG, you should find a neuromuscular specialist at a large teaching hospital. MG is so rare that most local neurologist have never seen it. Make sure they test for the 3 ACH antibodies and the musk antibody. If they are negative ask for a single fiber EMG. Only about 85% of Mgers ever test positive for antibodies and that is often later as the disease progresses.

Where are you located? In Ireland? Perhaps someone in the group can recommend a doctor or MDA clinic in the area. Do not give up. It took me 2 years to get diagnosed but now I am finally getting treated.

Good Luck and let us know if you need any more guidance. The board is also very helpful in giving advice on managing the day to day symptoms.
kathie