Hello everyone,

I don't quite know where to start. I want to keep this brief...ha!

A year ago my elderly father died and I found out he had MG. He probably didn't start having symptoms until his mid to late 70's. He never had eye involvement. It affected his throat and he ended up with a g-tube after already dropping to 130 lbs. He was 6'1" so it was crazy they let him get so skinny. Anyway he was misdiagnosed or undiagnosed for about 15 years. The MG was never treated and he died from it.

So- back to me- I was diagnosed with an autoimmune type of arthritis called Ankylosing Spondilitis. I think I spelled that wrong. I've been taking TNF -biologic immunospressants. They have helped with the pain but not the fatigue.

A year ago I started having double vision in the early morning. Only when I had to get up at 7 to get my daughter off to school. Only on the days when I slept poorly and was dead tired and felt worse than when I went to bed.

I also noticed my arms felt much weaker. Where the previous summer I had power washed for 2 hours at a stretch, I could know only do 30 minutes and my arms trembled so bad when I was done I had to use both hands to hold the glass still enough to drink.

Because of these symptoms I was referred to a neuro-muscular neurologist. It was around the time I learned about MG from my father's death.

He ran the antibodies and did a brain scan. They were both normal. I was sure I did have MG.

But at the end of August I started having such terrible fatigue. I actually couldn't keep my eyes open and the second I laid down I fell asleep and slept for 2 to 3 hours and then could get up and function again. Also, the early am dead tired double vision returned after disappearing for months.
And I started having some "ocular migraines" seeing colors as with a migraine but no pain.

My doctor talked with the neuro I saw and ordered a bunch of blood tests which were all normal again. I'm getting another MRI this Friday.

I did notice one thing though my original ACHR antibody test was 0. This time 7 months later it was .2 which is still in the normal range but getting closer to .5 which they call positive for MG.

I know my symptoms are atypical I was wondering if I should still feel confident I don't have MG or push the neuro for further tests when I see him.

I'm 41 years old. I have to nap now from 2 to 4 hours a day and often am just exhausted always. I don't have ptosis. Don't have trouble with my eyes at night when I'm tired. It's weird.

I really don't know what to think.

My daughter is 7 has some strange episodic neurological problem too. She is much less affected now. Best they could figure she had atypical child migraines. She has very mild ataxia always and about 3 to 4 times a year it gets worse for a couple weeks. We still have no answers after MRIs, EEG's, and a slew of blood tests. I kinda wonder about MG and her. She was never tested for that.

Anyway, this is very long. I love to hear you guys thoughts.

Thank you for your time.

Serena