Have had double vision for three years. My new ophalmologist (old one retired) was quite concerned about it and sent to to a neuro-opthalmologist at the local university medical school. He's been evaluating me for MG. Two blood tests were negative and now my SFEMG was abnormal, but not conclusive for MG. The neurologist who did the SFEMG said could be, but he couldn't prove it--the abnormalities could all be explained by my diabetes.

Today my new pulmonologist said my lungs were fine and would not explain my shortness of breath, but that I was hypoventilating as my muscles are too weak. She's sending me for a sleep study (said I have apnea) to get a CPAP, gave me a brochodilator to try (probably have mild asthma), and is sending me for nutritional counseling to help me lose weight and pulmonary rehab to help my breathing muscles.

So I have 5 weeks till my next appointment with the neuro-opthalmologist and am wondering what else could all this be--the droopy eyelid, the double vision, and the shortness of breath? I thought the SFEMG was definitive for MG, if done correcctly, and mine was quite thorough and seemed so. Oh, yes, I also have slurred or raspy speech at times and occaisional trouble chewing. Ideas, anyone?

Here's my experience: I tested negative for the antibodies. My first SFEMG came back "borderline." My second one came back "abnormal, but not enough to be conclusive for MG." Then my doctor sent me to an MG specialist in Boston. He did a third SFEMG, this time on my face (even though I don't really have eye symptoms). It came back very abnormal, and he diagnosed me with MG.

What to make of this, I don't really know. Maybe I'm a fluke, or maybe the way SFEMG's are read varies more than we realize. Maybe something was interfering with the readings of the first SFEMGs.

Abby

It is possible to have all the symptoms of MG and it really be caused by a bunch of different issues. It doesn't seem likely though.

It looks like a duck? It quacks like a duck? It is likely to be a duck. Or MG.

Probably the best choice here, if your insurance allows, is to get to a neuromuscular/MG specialist. You will generally find them at large teaching hospitals. You may need a referral from your neuro-opthalmologist, as these specialists are often hard to get an appointment with.

My thought is that you try to set up an appointment with the neuromuscular/MG specialist on your own - which may be a wait of several weeks or even months, so that you have it in place in the event that the neuro-opthalmologist's findings are still inconclusive (decreases your wait time).

If you need recommendations for a specialist, just ask the people in the forum if they know of one in your area of the country.

My neuro-ophalmologist is at a large teaching hospital, in the department where someone recommended a college as being tops in the MG field. The neurologist who did my SFEMG is also a part of the teaching hospital staff but works out of one of the hospitals and sees "difficult" cases he said, for my neuro-opthalmologist. My N-O seemed very highly regarded by the neurologist. I have also seen 4 different residents working on neurological specialties before seeing the teaching doctors. My appointments are typically 2-1/2 to 3-1/2 hours long, with very little time waiting except when the residents are talking with the doc before he comes in. The SFEMG took 2-1/2 hours as well.

Here is my experience. My local doctors in NJ were stumped, but sent me to a neuro-opthamologist for evaluation. I did't like this doctor and he acted like I was crazy until he found my eye muscles weren't working well on exam. Never the less he sent me for a Repeat CT scan of my brain and orbits ( previously done by my opthamologist) which was unchanged. I
I saw an ENT in NYC for another problem and he got me a quick appointment at a major teaching hospital with another neuro-opthamologist where I was given a preliminary dx of myasthenia on the first visit based on exam. Serum antibodies were drawn and proved to be negative. I was referred to a neurologist who did an inconclusive EMG on me. He stated that we could make another appointment for a single fiber EMG (as the test takes a long time) or he could do a Tensilon test right then in the office. I had the test, it was positive and had the diagnosis on that visit.
It should be noted that he sees myasthenics in the hospital where emergency procedures are in place should there be an emergency as Tensilon can sometimes slow your heart rate.
I have been on Mestinon and now Cellcept and am improved overall. the goal is to go into remission with and then without the Cellcept.
Hang in there, it is a journey

All my tests were negative, my EMG inconclusive, but the machine was malfunctioning. My neurologist said he could send me to a University hospital to run the tests again, but he was sure it was MG as the symptoms fit, and I responded so well to the Mestinon.

I chose to continue with the Mestinon and see him again in 6 months.