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Voiceless in the doctor's office

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Dr. Richard Grossman:
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.

Meh:
Yikes.

My brother went to 9 doctors before he found one that diagnosed him with Ankylosing spondylitis. It is genetic so there is a blood test that can be done for it which definitely gives a yes or a no. Sad that people have to go through so much dismissal.

I guess it is easier for doctors to say "you are making it up" than it is for them to say "I don't know".

Hopalong:
What a horrible encounter.
I devoutly hope that was your last appointment with this physician.

How frustrating for you ... and I am so sorry about the pain you are in.

Pain is a conversation nobody wants to be having with some boor who won't let them get away.

I'm so sorry.

Hops

ann3:
Hi Dr. G,

I’m so sorry to hear you are in pain.
I hope you can find a new PCP because this one sounds awful.
Someone I know once said that one should not go to a caregiver if one doesn’t like that caregiver & I agree.  I think it’s important to have a rapport with a doctor.

I think it’s telling that you apologized, like “Gee Doc, I’m sorry I displeased you”, LOL!
You deserve much better and I bet you can find someone better.
I agree that autoimmune is still in it’s infancy, but there are some docs who get it & I hope you find a good one who you like.
Wishing you all the best and relief.

BonesMS:
YIKES!!!!

It's bad enough to be in chronic physical pain and it's WORSE to be VOICELESS in a doctor's office because the doctor is NOT INTERESTED in LISTENING!!!!!

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