Seronegative myasthenia gravis: share your experience

[MG Community Member]

Being Seronegative has been an extremely challenging experience!!!! Doctors do not believe you have the diagnosis even with a positive single fiber EMG. It took years of getting an incorrect diagnosis prior to me finding a seronegative friendly doctor. I was able to get my thymectomy which helped so very much, however many others are not allowed due to being seronegative. I have CVID, which means I do not make enough IGG, or IGA. I have 6 autoimmune diseases, and I am negative for all because I do not make enough immunoglobulins for the tests to be accurate. Others like me are suffering and we cannot get the approved medications because our blood tests are negative even though we have the disease. More doctors need to be educated in the understanding that clinical testing other than blood tests should be accepted. The FDA needs to adjust the clinical trial inclusion criteria to allow seronegative patients participate in trials so that we can get the medications that we need. It is such a broken process.

[MG Community Member]

Seronegative MG can lead people through a complicated journey filled with misdiagnosis, difficulty finding the right provider, and barriers to treatment.

Many individuals have to put in extra effort to prove their symptoms repeatedly, even when other tests clearly indicate MG. Others reading this might see their own stories in what you’ve shared, and it adds an important voice to the conversations about seronegative MG.

-Jodi, Patient Advocate

[MG Community Member]

I am seronegative and my EMG tests were all normal but my neuro-opthamologist is confident that her findings are consistent with ocular MG and that my symptoms are consistent with early stage generalized MG. Ive been managing on prednisone for 6 months while I went to dozens of doctors before her. I just started mestinon and its helping. So I feel like a fraud in so many ways – do I have it? Don’t I? The neuromuscular neurologist thinks its just small fiber neuropathy but that misses so many symptoms and is really just a description of a symptom cluster, not a cause.

 

So its still a rough journey and I dont anticipate its going to get easier. I would love to connect with other seronegative people (or EMG normal, if those exists) as I could really use guidance as I try to navigate all this and the next steps.

[MG Community Member]

I am in the same boat. I have seen several different doctors over the past two years. This includes at least 6 different neurologists, no have been able to provide a diagnosis.

In November, I was seen by two different neuro-ophthalmologist, one at the hospital and one at their office. They both said my symptoms and my evaluation was consistent with Ocular MG. They prescribed mestinon 30mg, 3x per day. I was then to taper up to 60mg. After 4 doses, I had relief from my double vision. I previously had double vision for the past 10 months, except when laying down or tilting my head up or to the side.

I saw a neuromuscular neurologists yesterday who specializes in MG. She does not beleive I have Ocular MG. She performed my EMG in January and it was unremarkable. MG antibodies have been check twice and each teat was negative. She was able to prescribe me prednisone, so I am hoping that it helps my symptoms. She also scheduled an SFEMG, but I am concerned this will be negative if the prednisone helps.

 

I am so frustrated that the neurologists will not listen to the neuro-ophthalmologist. However, I am glad they prescribed prednisone. I will still go through the test recommended by the Neuromuscular neurologist, but if she can’t figure it out, i will make her discuss it with the neuro-ophthalmologist.

[MG Community Member]

I’m seronegative as well, and I couldn’t tolerate the EMG, so I think as far as they were able to go in my testing they hadn’t found anything. I also felt like a sham, and on a decent day I still question myself. Am I sure I have MG? I am! Three years in and I’ve developed more symptoms ( bulbar, choking, can’t swallow, lose my voice as soon as I’ve pushed myself too hard. And my eyes are so bad. I’m only on SCIG and the difference in my symptoms is striking. The only thing it doesn’t help are my eyes( double vision) but it does help the droopy eyelids. If you are able to try it I hope you receive as much help as I have! Good luck!