just got referred by GP to rheumatologist
 

This morning I had an appt with my wonderful GP. We reviewed the work that had recently been done at a local neurology clinic, which turned up nothing. The only thing it did find was an abnormal EMG.

Based on my primary symptom of major weakness in the legs (very hard to walk), he has asked me to see a rheumotologist who he works with closely.

I don't have any experience with rheumatology and don't know much about it. Have any of you ever seen one?

(Also, I asked about why the neuro tested AChR after they initially suspected MG, but no one ever tested MuSK. The GP didn't know, and was deferring to the neuro's decision that this is not MG.)

Rheumatology can address stuff like rheumatoid arthritis, mixed connective tissue disorders, etc I've never seen one personally, but have a friend with RA who uses one, and have seen many patients who have, back when I was still practicing.

The fact that your major problem area is lower extremity weakness, suggests that you do not have MuSK MG. It is more of a "neck up" presentation. I have MuSK and even on my worst days, can walk around unassisted. That is typical for MuSK MG.

Good luck!

I didn't like the rheumy I went to - but that was just the person, not the science of.

Back before I was dx'd with MG, this rheumy did a 'full' blood panel, and concluded I must have CFS (chronic fatigue syndrome) or Fibromyalgia because my blood results didn't show anything conclusive. Did I want a script for Lyrica?

That was the last we saw of each other!!

I saw two rheumatologists during my search for a diagnosis. They each did a good job of reviewing what the first 2 of the 4 neuros I ultimately saw, and scheduled what I felt were thorough blood tests. Some were repeated because they had been done awhile ago, others tests seemed to be on the rheumo side of things rather than neurology. Neither came up with my MG diagnosis, and neither had any better ideas based on the tests and history. But I was impressed with both, just knew I wasn't in the right place. It wouldn't hurt to get their side of the story, especially if the neuros haven't sorted things out for you to date. Best wishes!