For Radarmomma
 

I saw your post in the "Your diagnosis, treatment and other information" sticky. That is where people put info about their "MG journey" for others to read. So I thought I would start this post here with the info you put up there.

Well, my thoughts are that you need to see a neurologist. If you have MG, it won't show up on an MRI. They have to run specific blood tests: Acetylcholine Antibody and MuSK antibody. They would also need to do a repetitive nerve stimulation test or an EMG or a SFEMG.

If you have polymyositis, they should be checking your blood for CPK, creatinine phosphokinase. That disease is often checked out by a rheumatologist, since it is an inflammatory ("itis") disease.

If you have a primary doctor, they can check for basic things like thyroid, complete blood count, B12 or other vitamin levels, etc.

One thing that might help you, since you sound overwhelmed, is to write down every single symptom you are having, when they occur (i.e., always or only in the morning) and what is the severity of each one. You might start to see a pattern and be able to relay them to your doctor(s) better.

You need the help of doctors. There's only so much we can do here. I hope you can find someone to help.

Annie

First - welcome radarmamma! and thanks AnnieB3 for reposting!!

My 'path' started out similarly to yours, though my symptoms were somewhat different. My brain and neck MRI were clean and nerve conduction test was not bad. So, my PCP sent me to a rheumatologist who did tons of blood tests, said nothing remarkable showed up...I probably had CFS...and did I want a perscription for Lyrica!! (NO thank you)

At that point, I sort of gave up for a bit. But I was getting worse so I looked for a new neuro to begin again!! In my first appointment, that neuro said that clinically she would dx me with MG -- and immediately ordered the blood and nerve tests to confirm dx.

The difference? The second neuro has experience with MG and treats many MG patients. My symptoms made total sense to her and, by observation and a quick exam, she was quite certain of the dx.

Try to find a neuro who is currently treating MG patients. Your local MDA chapter may be able to point you in the right direction. It's amazing to me how many neuros are apparently not comfortable considering MG as a dx.

Good luck - keep trying!

Very good advice from Annie and from suev. Your local Muscular Dystrophy Association chapter should be able to tell you which neurologists in your area have the most experience with MG, or at least with diagnosing neuromuscular disorders. Myasthenia Gravis can often be diagnosed with a blood test. But MG is a rare enough disease that you really need a specialist! At the very least a neurologist, but preferably one with a special interest in MG.

Please feel free to post questions here. Most of us have been through a long journey to get a diagnosis (and some of us are still undiagnosed) so we completely understand what you're going through--the anxiety and uncertainty, and the fear of what's going to come next. We are very eager to share what we have learned, so as to help you through in any way we can.

Abby