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
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
If you reside in the United States, I recommend this MG specialist search and that you call and see if any are accepting new patients: https://myasthenia.org/living-with-mg/find-medical-experts . Let us know if you have any other concerns or thoughts on the subject! We are here to help 😀 -Jodi, Team Member 
Have you reached out to an MG specialist or a Neuromuscular Dr
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?
@It is good to hear from you! I am thrilled to hear you had an appointment with a specialist. I know, however, how confused you must feel about their thoughts on the mouth-dropping. Although mouth-dropping or jaw-dropping is not experienced by everyone or the majority with MG, it still can be an MG symptom. Keep in mind that MG specialists typically treat many other conditions as well and can't possibly know everything about MG. Usually, they use their past or other patients with MG to increase their knowledge of the disease. I encourage you to consider the messages in this article about educating and advocating for yourself when it comes to disagreements with your doctor: https://myasthenia-gravis.com/living/educating-yourself. Remember, they still can be a good doctor even if they may not know everything.
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Regarding the mouth or jaw drop, bulbar MG refers to those whose MG affects the bulbar muscles (jaw and throat muscles): https://myasthenia-gravis.com/clinical/bulbar-symptoms.-Jodi, Team Member
Apherisis.
