Just diagnosed. Double seronegative gMG.
Posted some icepack pics here while awaiting neurology appointment, was prepared for a diagnosis of ocular mg, but was diagnosed with “mild to moderate, clinically classic myasthenia gravis with seronegative antibody testing, fluctuating ptosis, facial and proximal muscle weakness, and fatigability”. Reading some of the other posts about struggling to get a diagnosis and me receiving a diagnosis so quickly and without some kind of concrete proof I can see, I’m just in shock.
The treatments terrify me- I was sent home with 40mg prednisone and mestinon. I started the mestinon and it has a positive effect, lasting maybe 4 hour at the most. No side effects that I’ve noticed.
I’ve asked for SFEMG (thinking this diagnosis must be some kind of misunderstanding), but my neurologist (Kaiser northern a California and specializes in neuromuscular diseases) said the waitlist can be 3 months and she wants me to start prednisone asap. The problem is - I refuse to take prednisone. I will consider Cellcept, but what are the safest options for fast-acting control? I would consider Vyvgart, but I don’t think kaiser would allow it without trying other drugs- including prednisone. Is my only option IVIG?
She offered to test for Lambert-Eaton (don’t think I have that) as well as a test for 21 genes - to see if congenial. I also don’t think that’s possible, because it sounds like people with the congenital form don’t present with ocular symptoms.
Even after pushed back on the diagnosis of generalized, my neurologist stands firm on her diagnosis - due to muscle weakness in neck, eyes, cheeks, arms and hip flexors. My ADL score is 4/24. Looking back, I do have fluctuations in strength (I work out and life weights daily - in great shape. 51 yo F).Also by the EOD, I slouch in my chair at work or sometimes support my head with my hand in meetings. My face looks melted at the end of the day as well. My voice also got weird and very hard to project after a cocktail with a friend - so, yeah- guess I’ve joined the club. Pretty devastated to say the least. Thankful though that if I do have a crisis, I have the diagnosis pre-crisis. I feel for those of you that presented in a crisis. Very scary!!!
Here’s pics of my mestinon trial. Not sure what I’m asking for, I guess advice on acceptance despise bloodwork, advice on medications, advocating for medication I feel best about taking, etc. thank you in advance. Happy 4th.