I wonder why we are treated by neurologists rather than by immunologists anyway. If this is an autoimmune disorder, it seems like we have the wrong doctors.

I asked the same thing to my doctor. She told me it does not work that way. If they are neurological antibodies, you go to the neurologist. If they are connective tissue antibodies, you go to a rheumotologist and on and on. The autoimmune symptoms are so similar and patients often have more than one auto-immune disease. You can go for years testing one antibody at a time, why can't we just go to an immunologist?

kathie

Hello, I am new to this site and in the very early stages of testing. I have had an MRI (no problems), blood work (except for the antibody test which for some reason wasn't done, and an emg test (normal). My primary issue is a drooping left eyelid, no double vision and as far as I can tell no muscle weakness. My neurologist did an ice pack test on my drooping eye and for a few minutes my eye no longer drooped. She told me that the positive ice pack test is only positive when a person has MG. With that result she started me on mestinon. I'm wondering if I should be taking this medication without any other form of confirmation. I had bloodwork done on Friday for the antibody test, I was hoping I would have the results in a few days but based on what I have read here that is not likely.

Does anyone know if this icepack test is enough to say I have MG?

I would say yes. If it's not MG the mestinon will not work or make you worst. It is not a dangerous drug.
Mike

If everything else is negative and the ice pack ice positive, my neurologist will say you have MG.

Thank you Mike, that's good to know. While my eyelid has not stopped drooping I am noticing that I can open it a bit more for a few hours and then it goes back to the same droopy position.

I am anxiously awaiting the test results and very grateful that I have found a place to talk with others about this situation.

Thank you for your reply I am so grateful to have the chance to talk with others that have been through this experience.

It's a long hard journey. Take it a day at a time. Do a lot of reading so you can know what MIGHT happen. Mestinon only lasts about 3-4 hours.
Mike

I'd ask for a Tensilon test, even though you feel you have no weakness or balance problems. If that clears up your eye, then yup, you got it!
I have generalized MG that deteriorated enough that I was on the sofa playing vegetable most of the summer until I went to my neuro for my annual sleep study. He was the one who noticed the drooping eyelids, and when he showed me how weak I was I was shocked! I ride horses at least 3 days a week until this started, so I'm pretty fit, especially my legs. When this little slight man could push them to the ground, well...... He gave me the Tensilon and 2 minutes later, I won! My balance returned somewhat. Unfortunately, it lasted another 3 minutes and was gone. So was my supposed fibromyalgia pain(during the drug's active period)!

Oops3,
Are you saying that the tensilon stopped your pain? Are you on mestinon? Does it help stop pain? I can't figure out why I have so much joint and muscle pain. The rheumatologist said that I was getting old, that I didn't exercise enough, and that I overdo exercise. I wasn't sure how to decipher that except that she was full of malarkey. I wonder if this pain is all secondary to my MG.