Just dx Myasthenia Gravis

[SimplySteve]

Have had eye problems for over a decade leading to 5 operations, and likely more to come. Then muscle weakness in arms and legs, then issues swallowing.

I've been told this morning that I have the autoimmune condition Myasthenia Gravis. Whilst I'd done my own research, and not particularly surprised, I am shitting myself.

If anyone has any words or advice I'm all ears (and my ears are pretty big). Just shocked really.

I've been noticing my eyesight becoming blurry too, and seems to tie in with when I'm becoming fatigued/exhausted. Something my DW picked up on too is a lot of the time I will have one of my eyes (usually right eye) closed.

Yup that the same for me. I know when my Myasthenia is bad when in get a droopy eyelid.

See a new GP and tell them you need a referral to a neurologist - you need tknget started on meds asap.

Join the FB/Myaware group asap- they can help with finding a specialist Consultant local To You and possible an email address for the clinical nurse specialist to try and get a appointment sooner

Little update.

Eye problems still bad. I had a letter confirming December appointment for both ophthalmology (and upper g.i (long story)).

Then I receive a call today asking if I can take a cancellation. Next week. Said yes. I'm shitting myself. It's as though everything depends on this consultant, and I'm fearing him being dismissive, and fobbing me off.

I tick so many criteria, so give me the fucking treatment!

But yeah. I'm scared. Shit scared.

Resurrecting as I'm finally seeing Neuro today (Sunday), it's been a long wait and I'm just hoping to get confirmation so treatment can start.

Boatload of tests including nerve conduction studies being ordered.

Steve, how did you get on at the neuro appointment. Have they sorted out appropriate medication for you.

Sorry I have no personal knowledge of your particular condition so can’t offer specific advice, but I hope you are feeling ok and receiving the help you clearly need.