Do You Have Seronegative Myasthenia Gravis? What Treatment Has Improved Your Symptoms Best?
Are you diagnosed with seronegative MG?
Which treatments have you been approved for? Which have you tried?
Which form of treatment offered you the most improvement, and what doses?
- Jodi, Team Member
Yes
In the beginning I tested positive per antibodies and then have tested negative since then. My symptoms were really bad the first 3 years of my diagnosis and now they just have a tendency to come and go. I've learned how to manage the symptoms fairly well. Although some days the symptoms are really bad and the fatigue is overwhelming. It's like being on a never-ending merry-go-round.
I am on methotrexate SQ weekly injections. It definitely helps. If I discontinue the injections, which I have done in the past, the symptoms/flares tend to be worse and last longer.
I have diagnosed my self as so negative. I am a retired doctor and so far even though an urgent request was sent in by my primary care. There has been no response by any neurologist to see me. I saw one at IU med center who might asked for a therapeutic trial as a test for a diagnosis and he just laughed. So that’s when I shot out a second neurological consult and I am still waiting. It’s been over one month for an urgent request from my primary care. This is stupid. This is so stupid. I guess I have nothing else to say because I don’t even know if anyone’s listening to me thank you bye
Is this list of medical experts up to date? The Neuro Opthalmologist I am seeing is in Peoria, IL but comes to a Springfield office about every 3 months. That list of medical experts, https://myasthenia.org/living-with-mg/find-medical-experts/, is provided by a different organization than us, called the MGFA. Although they are a very active organization, that list may not include all the locations those doctors oversee or could have doctors listed that are no longer taking new patients or treating MG. My MG doctor, for instance, is not on their list, but other doctors from the same practice are. Practitioners have to apply to be on the list. So, the list could help lead to an MG specialist, if not the one directly listed, but possibly another doctor in their office or practice.
Jodi, Team Member
I have seronegative mg the best treatment was having my thymus removed. After a lot of research and a dear friend having robotics done. She was fine for six months than mg progressed. To the point she was in power chairs.
After talking to my surgeon who explained that cutting my chest open he could get all my thymus.sometimes thymus cells live in fat around heart and can reproduce again.
But he got all of it. I am 85% better and over time it gets better. I do have mg days though.I relate to this very much, except that I am generalized, not seronegative! So glad to hear it helped for you as well 😀 -Jodi, Team Member
