General questions
I was diagnosed years ago, as the years have past I could do less & less without losing my breathe. I'm on IVIG twice a week every other week.
My doctor or lp's don't seem to know much about the disease, so I'd like to ask some questions here.
As I understand there's is a MuSK positive & a ChR positive, is there MuSK negative & ChR negative & still have the disease?
Does anyone in the Orlando area of Florida that specializes in this disease? Thank you
Hi
sorry to hear that your current practitioners do not seem to be that knowledgable. There are those with MG that do not have any of the commonly associated antibodies. They fall under the category of seronegative MG, you can read more about this here - https://myasthenia-gravis.com/seronegative. I also included more information on blood testing involved with MG diagnosis, included information about MuSK and AChR - https://myasthenia-gravis.com/blood-tests. Additionally I shared an article that speaks about finding a specialist and includes a link to the Myasthenia Gravis Foundation of America's search tool for finding one - https://myasthenia-gravis.com/living/finding-doctor-specialists. I hope this information helps. Please do not hesitate to reach out if we can help locate any other MG related info or simply provide a listening. We care and are here for you. -Jessica, Team Member
