So sorry. Did he do a Tensilon test on you and/or check your acetylcholine receptor antibody's? The Mestinon will diffently help the mucsles if it is MG. Did he put you on Cellcept also? It sounds like it is MG. This a great group called the Myasthenia Gravis Foundation of America (MGFA)
Best of wishes to you.
he did not do a tensilon test and my bloodwork was good. he says sometimes when mg only affects the eyes that bloodwork will look ok.
What tests did he run? Did he run both acetylcholine antibodies and MUSK antibodies?
Did he do an EMG?
It just seems strange that you are diagnosed solely on taking mestinon.
I had to take blood tests, EMG, SFEMG, muscle biopsy, etc. etc. and I got diagnosed (and then undiagnosed since I do not show antibodies and my eyes are fine...)
If you start to get weaker, there are other meds to add.
Hi there. Thats true. I think there's a 20-30% chance of the AChR antibody's showing up when it is just in the extraocular muscles. Watch for any facial changes or if you swallow...lets say you drink milk and it comes up threw your nose. Let them know if anything like this happens along with, muscle weakness or trouble breathing. Hopefully this is just in your eyes only though known as ocular MG.
The MGFA inforamtion listed above is really good. I have belonged to this foundation for quite a few years. Best of wishes to you. Amy.
Like Amy says, watch for any further symptoms. I too had Ocular MG which quickly progressed to extremity muscle fatigue as well, plus facial and chewing paralysis/weakness. And symptoms can come on quickly so be aware of any changes, however vague they may seem.
Typically a positive Antibody test (AChR) will confirm a diagnosis of MG, however, a positive blood test AND a positive tensilon test is definative.
As stated previously, if meds are helping, that makes me think MG. However, if your physician is basing your diagnosis solely off meds, I would want to get some more testing done, simply because these are not benign or easy meds to take. They can take their toll on your body and can have some very nasty side effects. I wouldn't want to take them if I don't have to.
The fact that your blood work is fine is not surprising. MG patients can have negative blood tests for years, while having some symptoms, before it shows up on labs. They tested me for 2 years with negative results until it finally showed up positive. So hang in there.
But my advice is to ask a few more questions. Ask to see your AChR results. Even slightly high is positive. A tensilon test might be worth checking into. But again, if you are seeing good results from the meds, sounds like MG. The meds usually resolve ocular symptoms very quickly (within days). If you are having these symptoms, probably MG since not much else mimics MG.
Once symptoms are under control with meds and or thymectomy, MG is very manageable.
Good luck to you.