Reply To: Do you have Seronegative MG?

[Community Member]

Hi ,

 

I too am seronegative.

I began symptoms 8-10 years prior to dx. Eyes, shortness of breath, fatigue, fatigue, swallowing upper arm fatigue.
I had 4 antibody tests specifically looking for it, by my neuro opthamologist, but as I had just finished cancer surgery,  cardiologists, pulmonologists, rheumatologist and others, all attributed it to the cancer. I literally spent 3 years in So. CA running to multiple specialists because I was not me.
finally after a steroid pack used for my back, and all symptoms improved or disappeared, my opthamologist sent me to a neurologist who sent me to get the SFEMG and BINGO!.

but as you all note, we still get pushed in a corner of, is it really MG or another muscular or autoimmune condition.

‘fortunately I am now seeing a neurologist who still questions “if’s” but tests my MG symptoms. My husband and I shake our head because I am so textbook symptomatic.

I think they just gave not yet identified the antibody that the 15% of us have. They continue to identify so I’m sure they eventually will.

but it does beg the question, “will we respond the same as an ACHR or MUSK identified” patient.

Currently I take, 3-4 Mestinon/day, IVIG, 2 days every other week, and weaning from 20 mg to current 12 mg prednisone.

i have found the IVIG while immediately was effective, as I weaned the prednisone, the pred rebound greatly impacted the progress of the IVIG. This last infusion was great, and I opted to not drop the prednisone because I wanted to continue to feel relatively normal. I’ll drop another mg right prior to next infusion.

with that un mind, we all must know our bodies, how meds affect them and either have a discussion with our dr.s or if they blow us off, continue to manage our health with their help as best we can.

I am most interested in the Seronegative’s Keeping in touch, through here or another platform so we can assist one another. We are a very small group and do get left out of many of the trials etc.

im sure we are all over the country but if any of you are interested in a zoom or FaceTime monthly get together, please PM me and we can try to organize something.
it might be beneficial, especially if we do respond differently.

Out of curiosity, do any of you know how many pairs on your SFEMG were positive? Maybe positive is not the correct verbiage, but I was 2 out of 20 which  leaves some gray area in the mine of 1 of my 2 neurologist’s.