Teresa, thank you, thank you, thank you!! I could give you a big tight hug!
This journey is like a ‘war’ and so often, I feel like I am battling against the system! It feels like I have to convince Neurologist that the symptoms I have are real even though often they can see the ptosis for themselves!! Thank goodness that my GP and family are behind me!!
My ACHR was 113 last July. I was advised that I needed to be over 300 to be positive. I don’t understand why the 113 doesn’t count. Lol.
My MuSK was negative last July.
Interesting you stating that a positive response to Mestinon in itself is a positive for MG. Is that just for MuSK or both, MuSK and AcHR?
I am taking lots of time resting, I can’t do anything else otherwise my symptoms catch up with me, and I am useless for anything and just have to go to bed and recoup my energy.
I appreciate the diet advice and will follow for sure. I have been trying to do little walks at times. You have to laugh, that there is a 2.6km walking loop that I do. A lady last week ran past me three times! If you don’t laugh you’d cry hey!
I actually want IVIG as I want to stop this progressing which it continuing to do, but as I don’t fit into any tick box, further therapy is denied to me.