[dallard]

My name is Don and I am a 55 year old male. My mom had CREST syndrome. My neurologist has been going back and forth with MG as a diagnosis.

I would like to have some input as to a tentative diagnosis and test results with the experience of this group. I realize that no response is a medical diagnosis...I simply am looking for input and assitance in how I can ask better questions of my doctors.

My basic symptoms include: Muscle fatique; muscle atrophy (arms, chest, and neck): loss of wieght (25 lbs over the last year with no change of eating habits); arm muscles stop working after minimal use; joints vibrate (mainly ankles and knees); shiver-type tremors from neck to head; head-rush dizziness most of the day; neck fatigue (feels like a thickness); usually no energy after 2pm

Symptoms I do not have: no eyelid or facial muscle dropping (some facial muscle twitching); no discernable trouble swallowing or breathing.

Positive Test results:

ANTI-NUCLEAR ANTIBODIES *POSITIVE

ANA TITER *1:160; ANA TITER#2 *1:160

AChR GANGLIONIC NEURONAL AB *0.33 nmol/L [<=0.02]

EMG/NCS test revealed some limited problems in the needle test in my left arm and shoulder.

The doctor is awaiting a retest from Mayo on the specific ACh Receptor (Muscle) Modulating Ab as it was indeterminate on the first try and required a redraw of blood. It has been 3 weeks and Mayo has a backlog...no results yet.

Does any of this track with your experience of MG or testing, etc...

Thanks for any input...since the doctors do not know what is wrong they are not treating the symptoms and it is drastically affecting my life. Don