Hi everybody,
Doctor’s are usually great at treating/acknowledging disorders that fit readily in one of the diagnostic boxes. However, if you have a disorder that does not neatly fit (and I have one of those in the autoimmune area), sometimes you can be subject to dismissal, anger, insult, and even abuse.
Recently my Primary Care Physician of ten years asked me to come in because my wife had e-mailed him about the pain/discomfort I am in. I am reluctant, at best, to see doctors, unless I know there is something they can do for me (autoimmune issues that remains unclassified and untreatable.) I have read 100’s of studies in this area because of my disorder and because I have a stake in a small life science company investigating autoimmune disease treatments.
My PCP asked me about my pain/discomfort, and when I finished telling him he said: “You are going around looking for sympathy.” I was shocked, and managed to get out of my mouth: “Oh, please!” Apparently, he was responding to the fact that in the past few years I had gotten a second opinion from a rheumatologist and also seen an allergist to rule out that cause of inflammation/nerve damage. I would have seen neither doctor because I knew the odds of them finding anything I didn’t already know about were almost nil—but my wife had insisted (“You can’t just do your own research/diagnosing…”) and also because I had just developed two new symptoms, Raynaud’s Phenomenon and photosensitivity, that might put me in a diagnostic “box.”
My PCP did his physical exam and when he finished said nothing. So I asked him gently whether he had seen one of the new areas of inflammation/swelling that I had noted minutes before (insertional Achilles tendinitis). He got angry. “Do you want to see my heel?” he said. (In other words: You are in no more pain/discomfort than anyone else.) Then he said I got that symptom from all the trials of quinolones (broad spectrum antibiotics) I had been on. I didn’t have the heart to tell him: I had only been on one trial (he prescribed it) that I had stopped after a few weeks because of a small knot developing in my Achilles tendon—but this was years ago and in another part of the tendon.
When we sat down in his office again, in response to my saying that I believe I have an autoimmune disorder, he said “Your CRP level (C-reactive protein--an inflammatory measure) is low." And then, angrily: "What do you want me to do?” He didn’t let me answer. I would have said: “Nothing. You’ve forgotten that you asked to see me today. I know the treatment options, and am aware that there’s nothing more to be done right now.” Instead he ordered nerve testing on my dead leg nerves—(IMO, there’s no reason for further testing—they’re dead) and my arm nerves. Then he dismissed me from the office.
When I was checking out with the receptionist, I saw him briefly in the doorway. “I’m sorry,” I said. (LOL, this was my typical childhood response to situations like this…) He said nothing and waved me off with the flick of a hand.
I’ll stop here for now!
Richard
P.S. Because of my research, I know that autoimmune understanding is in its infancy. This is, unfortunately, part of the issue at hand. For those in the medical/medical research profession I have a positive ANA and an IGG above the normal range—all else (blood-wise) is in the normal range--my CRP level is on the lower end of normal. Based upon my symptomatology and this blood work, I fit in the UCTD (Undifferentiated Connective Tissue Disease) category—but not in the better-defined connective tissue disease boxes, e.g., Lupus, Sjrogen’s, MCTD, Smith’s, etc. Interestingly/sadly, my mother had connective tissue issues and died in her mid-60’s of Non-Hodgkins lymphoma. We know the two are related, but don’t know how/why.
