Reinventing the wheel – Back to step one of diagnosis?

Regular readers should remember my history.  Actually, it is the same as most of my fellow NA/HNA/PTS (call it what you will) sufferers.  It takes forever sometimes to get a diagnosis of this kind nailed down.  I have had countless tests over the years that seem to suggest a diagnosis of Neuralgic Amyotrophy, and some doctors have agreed it is probably the hereditary version.  That is the diagnosis I have had since 2007 after my winging scapula, and it has been suggested that the prior problem with my right hand was an earlier flare of the same thing.  I have also determined on my own, that I have had a number of previous possible flares dating back to around age 12.  Fast forward to today.

Well, actually starting the end of last summer to be precise. . . I had a few weeks of pain very similar to prior episodes.  One might think that by now, I would be a pretty good judge of how this manifests itself.  But each doctor seems to have to reinvent the diagnosis.  I have told my current and still relatively new doctor about this possible flare up.  I have given him information about the disorder, namely the St. Radboud pamphlet referenced in my links section. My current arm pain resulted in a bit of a loss of range of motion since the episodes of pain lasted a long time, and resulted in my loss of some arm strength.  That pain is ongoing.  He has done an MRI of my shoulder to rule out orthopedic causes, and there does not seem to be an orthopedic cause for the arm pain.  Now, since I have pain after months of Physical Therapy and recurrence of arm weakness with that pain, he seems to think it could be due to problems in my thoracic spine.  I told him that I had an MRI of my neck years ago which did suggest I had some mild disc degeneration, but not at sufficient levels to cause the pain I had back then.  In a funny Déjà vu, he suggested that if the MRI rules out an orthopedic cause for my ongoing pain, that he would suggest that I see a certain doctor in town.  He mentioned the name, and it is the same doctor I had seen years ago who thought I had muscular dystrophy.  I said I was acquainted with him, and he asked how my relationship was with this doctor.  Well, it started out good, but when I called to ask him if he would see me for pain issues when I had still had better insurance, I was told he did not want to take the case.  Any reason why?  No, they just were not interested in seeing me again.  I guess I would have to see someone else if it comes to that. . .

Anyway, I guess it is OK to rule out things that may not be known, but I have a diagnosis that is of a disease for which there is no cure, and people do not generally get better. Even in types of NA that do not repeat, full recovery to prior level of function seems to be rare.  In my case, I have a form which repeats.  In those types that repeat, you have even less chance of full recovery of prior function.  And in my case I have ongoing weakness and periodic bouts of pain.  This has gone on most of my life.  Sure, look at other stuff if you have to. But the diagnosis is what it is.  There are certain aspects of this that do not change; at least not in my case.