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
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
I. Have been busy with Doctor's between my husband an myself. I saw an MG specialists yesterday. He did a Jolly test. Results definitely were I have MG. OK. We know that I've been on mestinon 5 mg taking 2 times a day, today start taking the 5 mg 3 times a day. Have also been on Prednisone 5 mg taking 1 a day. Now to add 1 a day each week for 3 weeks until I see him again. If feel better with increase then don't need to further increase. In this visit was mentioned I asked about my mouth dropping when I get tired. He said that doesn't have anything to do with my MG. Though that is contrary to everything I have read about MG. Any help on this?
@getting ready for a 5 day IgG infusion. Of course i am a worrier, but infusion nurse called and allayed some of my fesrs. So pyridostigmine, immuran and now the IgG infusion. Sx? Lid kag in left more trouble swallowing, extreme weakness upper legs and now upper arms. And on too of all this development of axial lumbar arthritis-but excellent candidate for a relatively new surgery where a tract is drilled in one or two vertebral bodies, a RF ablation catheter snaked up there and wham-total destruction of the offending nerve. So getting older not for sissies. Joined a dating site for people my age: carbon dating site! Big smile-we all do need some humor through everything. And i love hearing your stories. Thanks Hey there! It sounds like you're going through quite a lot, but I admire your strength and sense of humor. It's great that the infusion nurse was able to help ease your worries. I'm glad you're exploring new treatment options for your arthritis. That surgery sounds promising!
Jodi, Team Member
