Hi @robin0613

So update for you. Saw the neuromuscular specialist on Wednesday and got my EMG. Her findings were enough for me to get the official diagnosis of brachial plexus.

She was a real piece of work, much more into esoteric nerve diseases and really contemptuous of my "not very rare" problem and told me that "with good diet and taking care of your body I'm sure you'll be fine."

Luckily since the first neurologist had me loop in my radiologist, she's put me on steroids with a taper, we're doing trental and vitamin E, and I'm meeting on Tuesday with the hyperbaric oxygen treatment team to start that up here as soon as possible.

She got involved after the initial consultation with the neuromuscular neurologist, I think after I told her that the gal said the only treatments would be vitamin b and OT. 🙄

I saw my physical therapist for my cancer surgeries yesterday, and the lame neurologist also got me set up with OT which should start in June.

I asked the specialist what the timeline would be and she said oh every patient is unique, "you're special", and I asked her about continuation of care with her and she seemed surprised that I would think I would ever see her again. After that I asked the first neurologist if I could see him, since she said the only thing she would do is another nerve test if things regress, but alas my general neurologist feels way over his head so he declined, sadly.

I meet with my radiologist a week from Monday and I'm going to find somebody else at UCLA who can be my neurologist for all this, LOL.