JimLA,

What a shame you had to go through misery from that fellow that insisted his way was the only way. I’m sure all illnesses presents differently for each person. I had corneal edema alternating eyes last summer and two UCI docs couldn’t figure out what was causing it until they did a biopsy. That’s because it was an atypical presentation but it still doesn’t change a diagnosis. I think what you said sounds very true. Believe I have slow progressive where right now my nerves have been able to keep ahead of the destruction because that’s slow enough. How have you been lately?

Jaimerz66,

I was shocked to read your post as your suspicion is spot-on. I’m guessing you must have been at UCI to begin with in order to have been treated by Mozaffar. Thank goodness your new neurologist trusted himself! I’m curious what he thought you had to begin with? He was the one who dxd me with brachial neuritis so perhaps when the denervation continued he was reluctant to admit it may have even caused by a larger disorder. I have been tested for EVERYTHING! Especially genetic studies and entrapment neuropathy. Not one lab test has been even slightly abnormal and that include neurology and rheumatology. The only thing abnormal is continued nerve/muscle studies.

I decided to call the neuromuscular center yesterday and am waiting for the second call back. For those who have never been there, the center itself never answers the phone and once you requested a call to schedule an appt they say they’ll call back within 2 days!!!! And I’ve been there before. Anyway, I requested a transfer to a different doctor there, Namita A. Goyal , MD. I wanted a fresh opinion looking at my neurodiagnostic studies. But hearing from you, I’m feeling that if they don’t allow that, perhaps I shouldn’t even go back to him. Can I ask who your neurologist was that was seeing you after your hospitalization. Are you still in Orange county?