new here and need advice please
 

Hi! I am wondering if anyone who is seronegative and sfemg negative has ever been able to get a diagnosis? I have all the hallmark symptoms ( eye drooping, loss of voice, chewing fatigue, arm, leg, neck fatigue ) In fact, these symptoms have become so bad over the past year that my PCP who believes this is MG has signed for a disability plaque for my vehicle and that I could benefit from a service dog. I have both now and do find my service/mobility dog invaluable. My neurologist thinks this is MG but would not diagnose until I saw a neuromuscular (MG) specialist. I did, he did an SFEMG and said this is not MG and sent me packing back to my main neurologist. Thankfully my main neurologist gives me Mestinon, but although this helps my body it makes my eyes worse, so it is rather a conundrum; do I want to move or do I want to see! At this time I would be willing to go anywhere in the country for a doctor who will make the diagnosis and treat me. Fortunately, I have great insurance. It is difficult for me to comprehend how anyone can go from being an athlete to disabled in a years time and not be able to receive a diagnosis or help. Any neuro referral would be greatly appreciated! Thanks for your time. You can pm me if you prefer.

Welcome to the forum!

I am seroneg and borderline on sfemg. My dx - like yours - was made through clinical observation by a neuro. (Sounds simple - but it took 2+ years and many dismissed docs to get there.)

Anyway, I take Mestinon (generic) and put up with the eye twitching to get the benefit for my arms and legs. It is 'more common' for people to have eye problems first before (if ever) progressing to generalized...but if there is one thing about MG that is consistent...it is that it is NEVER consistent!! Not within time or across patients.

You need to check out MG specialists - many are affiliated with teaching hospitals. I know some folks here have gone to Mayo. There is a famous MG neuro in Florida (somebody here has gone there - I can't remember his name - but they'll post it)

Good luck with your journey. Ask tons of questions - the folks in this forum have much experience and wisdom that they freely share.

Thank you SueV, so very kind. Nice to meet someone who shares seronegative. Yes, mine began with chewing fatigue then went to legs,arms, eyes and voice in that order, each about a few months apart. I think what throws the docs is that I also have temporal wasting and footdrop. I have read that this is not unheard of with MG though. You are so correct in calling this a journey. It sure is one heck of a ride, isn't it? The Mestinon causes my eyes to droop more, but helps the other muscles. Is this common?

Mestinon, usually helps the eyes to droop less. But usually does not help the DV much. But every MG case is different.

Temporal wasting I have never heard anyone reporting that before. Footdrop or flappy foot, yes that can be MG. Though of course it could be a lot of other things too. That is what makes MG so difficult.