Originally Posted by Mikanro

Hi! Yes, it can definitely seem to come on suddenly. 8 months ago I was a normal 34 year old and then I fell apart. It took 3 months and 5 doctors to get a diagnosis though. (An eye doctor figured it out and then a neuro confirmed it.)
I said "seem" to come on suddenly because as time goes on, I realize things were not quite right before. And I notice my eye turning out and ptosis in pictures when I look back.

But my life seemed normal at the time and now... it sucks. I take the same meds as you except my mestinon is 120mg every 3 hours and I just weaned from 80 to 60 mg on prednisone. They started weaning me after I started IVIG infusions. I also take Cellcept but they are getting ready to change that to a different one (plus the 4 medications for my heart, but that complication is really rare and would not apply to your situation.) Oh I also take mestinon (pyridostigmine) 180mg extended release at night.

Weaning off the steroids will help steroid side effects, but can make your mg worse, better or change nothing noticeable. It depends on your situation, how long on them, etc. For example going from 80 to 60 has made no difference in me.
But a few doses of solumedrol given by a clueless ER made me worse and going back to 80 a day was definitely an improvement.

I asked for physical therapy. They said no. That my PT is walking across my one story home without collapsing into a heap [emoji23]

I recently realized that getting hit by this has resulted in a real grieving process. I have grieved for my old life. Resenting the things I did not do but could have and laughing bitterly at what I thought mattered at the time.

Now I just want to play with my kids.

Eventually I realized that I was still not doing things I wanted but I actually could do. I had to drop some pride regarding help, assistance devices and refocus. See, I am a photographer who cannot see properly... unless I close one eye. And I only shoot with one eye...and it is not the bad one. Sessions are hell but taking pictures of my kids is my life love. That is the thing that has gotten me this far. I would not have made it otherwise.

I cannot answer much about the thymectomy. I do not have the tumor and removing the gland has not been mentioned as an option. (I am not sure if it ever will be since I am seronegative?) I go to an MG clinic soon so I am sure I will hear about it if it is. 3 weeks and counting before I get a little more expertise than this tiny town has to offer.

And I cannot wait.
Accept your grief- from sad to desperate to angry and beyond hopeless. But find your thing. Your life love. And find a way to do it, the closest way you can, no matter how much help you need.
It will save your mind.

-Anna