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

Welcome Don...glad you have found this site.

It is agonizing waiting for test results. And as I am sure you know, just because the antibody tests are negative doesn't mean you don't have MG. I am neg for AchR and was borderline on the SEMG - - but I have a noticeable response to Mestinon.

If your test results are neg....you might want to ask your doctor about the pros/cons of a tensilon test....or even a trail dose of Mestinon. From what my neuro says - only MG'ers have an improved response to Mestinon.

AS far as symptoms you describe...I can only compare to my own. I have had no weight loss or muscle atrophy. I do have the weakness and tiredness you describe -- though it varies in degree from day to day even with medication. I have no tremors or dizziness. I do have mild ptosis.

MG is different for everyone...and it seems very challenging for many neuros to dx. Hang in there! I hope you get some answers soon.

Don,

Has anyone tested your thyroid? Hyperthyroidism causes weight loss, tremors, and sometimes muscle weakness. Even if all your symptoms don't indicate thyroid disease, you should be tested, because it's common for people with MG to have Graves' (hyperthyroidism) as well.

Here's my story, in case it helps. I don't have ptosis or eye involvement (except sometimes a bit of eye strain). My antibodies tests all came back negative. I don't respond to Mestinon. I am diagnosed with MG on the basis of a single-fiber EMG (SFEMG) (and it took three of those before the doctor was reasonably sure).

I think in your situation, many neurologists would try you on Mestinon to see if it helps. It's a very quick- and short-acting drug. You'll either see a response right away or you won't (I mean it's not like you have to wait weeks for it to kick in), and if it doesn't work, or gives you bad side-effects, it's out of your system quickly. Just make sure you're not on Mestinon when--if--they give you a SFEMG, because it can cause false negatives.

Welcome, and I hope you get some solid answers. It's so hard to be in diagnostic limbo!

Abby

Thanks to you both. My thyroid tests are within normal ranges. No one will tell me why what the positive antibody tests mean. I would like to get a second opinion but I don't have a first one yet.

I will ask my doctor to try me on Mestinon.

Again, thanks so much for the responses...my wife and I feel quite alone in this process.

Don