It's all in my head!? arghhh!

So....the hemo asks lots of questions.  Long story short he tells me "I seem to know a lot" and wonders about my background.  I tell him I was a medical transcriptionist for years and when you're trying to figure out what is wrong with you - you do a lot of reading....that no one is going to be as familiar with your body as you are.  Hmmmm....he says.  He does his exam, finds no physical sign of polycythemia, and I offer no symptoms of it - it's just a rule out.  Then he tells me that I should probably see a psychiatrist, because "I am taking all this knowledge too seriously - letting it fill my mind too much and it's causing me lots of stress so I should get help tyring to cope with it."  In other words I'm a hypochondriac!  "If it was something more, then there would be more than the +ANA showing up in my bloodwork.  Then he looks at my meds and says maybe I should take the Xanax 2-3 times during the day!  I think my mouth was hanging open before I said I only take that for sleep on occasion,and I have no interest in increasing that. 

THEN he rattles off 3 tests to run for the polycythemia.  At which point I ask why he is running tests when he just told me he saw no sign of polycythemia (and I'm basically nuts for "worrying" about it -which I didn't say but wanted to.)  So then he cancels the tests and says that my pcp can follow the hematocrit.

I am so annoyed!  Anybody else been told you're "manufacturing your symptoms"?  He actually said that medical students do the same thing.....learn about all these diseases and then begin having symptoms.  ARRGGHHHH! 

I just saw my optometrist last week regarding possible eye strokes.  I had a stroke in 2002, and I was left with some seizure activity and some visual issues.  Lately, the "auras" are becoming much more frequent.  My eye doctor said as long as I'm on blood thinners, I shouldn't need to worry about future strokes. All my doctors have said that actually.  Anyhow, it's interesting you would bring that up.

Have you ever had your blood tested for APS or the Anti-cardiolipin antibodies?  Your rheumy can order those. They tell you if you have any need to worry about thick blood.

Keep plugging along. You're doing everything right.  The puzzle pieces will fall into place eventually.  I know it's so hard to be patient though isnt' it.

((((((hugs))))))

Ginny

it's all in your head . . . that's why you gained 20 pounds in a week

it's all in your head . . . that's why your liver is showing signs of shutting down

it's all in your head . . . that's why your kidneys are functioning at about 30%

it's all in your head . . . that's why you have chronic rashes that won't go away

it's all in your head . . . it's all in your head

it's all in your head . . . go outside . . . get more sunshine . . . get more exercise . . . eat less

it's all in my head . . . you are not the one who has to wake up every morning feeling like you were steamrolled repeatedly throughout the night and then has to try to make it through the day without crying your eyes out because you are so frustrated because you are too tired to do any of the things you love to do

it's all in my head . . . keep saying that while i have yet ANOTHER grand mal seizure on your floor while you watch . . . OBVIOUSLY something is wrong in my head or I wouldn't have seizures, now would I?

it's all in my head . . . keep saying that while the haloes that i see dance around your head . . . hopefully the iminent stroke waits until YOU have pulled YOUR head out of your rear end and cleaned your ears so that you can finally hear what I am telling you

Get a second opinion, hon . . . check with your insurance to see if they require referrals for 2nd opinions. If they do, call your pcp's office, explain what happened and request that they give you the referral without another office visit . . . my aunt had her first stroke at 42 and it really destroyed her ability to care for herself . . . please don't wait

Thanks everyone - it helps so much to know that people have the same experience and understand how it made me feel.  I should use the present tense because I'm still steaming about it.  I will talk to my pcp when I see him next about this.  The hemo had a medical student observing with him and I have wondered if it was all for his benefit.  It makes me cringe to think this was supposed to be a "teaching" moment.  Blechh!

Alien - Well put!  Sounds like you've been subjected to an even more profound cladderhead.  And I never turn down chocolate....lucky you to have such a rich source!

Ginny - I don't think I've been tested for APS - will ask the rheumie when I see her in a couple mos.  Good luck with your eye/vision issues.  The hemo asked me what my biggest fear was.  I said losing my vision - and never feeling any better than I do right now.  Silly, crazy, me.

Marji - you are so right.  I hope you get some answers and that everything will be AOK.

Thanks all for the encouragment!

Lucy

Hi El,

it really is insulting!  Especially since this was merely a hematology consult for a condition that can be genetic (2 yrs ago they developed a gene marker blood test for it) that my mother has been dealing with for over 10 yrs.  My rheumie and pcp thought I should be checked (thus the referral) since my HCT & RBC's have been elevated (mildly but consistently).  A no brainer!   Why he felt he had the need or the right to ask so many unrelated questions is beyond me.  I mean, he spent more time on the "social history" ("Do you like your son-in-law?") than anything related to polycythemia.  I believe the only question regarding that he asked me was whether I itched after I got out of the shower.  The answer was no.  He did a full exam, starting with looking at my hands, smiled patronizingly and said, well if you have polycythemia, then I have it worse, indicating the color of his hands.  I wanted to scream, for the love of pearl, I never said I had red hands OR polycythemia.....I'm freaking here to make sure I don't!!!

Oh boy - can you tell I'm still carrying this jerk around with me!?  I should have asked him if he recommended xanax to all his patients.  Grrrr.....well, anyway - I''m glad I stopped him from doing testing - I want nothing further to do with him.  We'll watch the HCT and if it continues to climb - I'll get help elsewhere.

Thanks for your post.  I won't forget about it - and I will talk to my pcp about this experience.  I'm sorry about your mom. And I'm glad your sister is doing well.  It just sucks that you all had to deal not only with the AI stuff, but with incompetent doctors as well.  Just shouldn't be that way. Glad you have a good rheumie.   I LOVE the t-shirt!    Sorry about the long post ----- I guess I'm still working on getting this out from under my skin!!!

Lucy

The following year I moved to Fla. and had a great PCP who sent me to a wonderful rheumatologist. The first thing she said when she came into the exam room was, "I think you probably have lupus". Sure enough, all my labs came back to prove her right. I could have killed the first rheumy, because it was a year wasted without any treatment.

When we moved back up here to NJ, I had to find another rheumatologist. I went to three in a row who I left the offices in tears because they were argumentative and accusatory, as though I was trying to get something for nothing. Lupus? That's the prize? I'd love it if someone said that all this pain and fatigue I have isn't lupus. By this point, I had gotten SSD, and yes, saw a psychiatrist (in Fla) who said I had every right to be depressed after having to give up so much because of this darned illness. He put me on antidepressants which helped tremendously.

My lupus was quiet for the last few years but now it's back in the form of lupus pneumonitis and possibly lupus nephritis. I have a nephrologist's appt next week and just had a ton of labs done, which were ordered by my new rheumatologist, a female doc at Jefferson in Phila.

I have always done better with female rheumatologists. Maybe it's just me; maybe it's because SLE is so predominately a female disease that I find them more compassionate than male rheumys. Maybe I've just been unlucky to run into 3 or 4 of rheumys who happen to be male who have the worst bedside manner ever. Maybe I was just spoiled down in Fla.

Hang in there- you know there's something wrong. Find another doc and get your questions answered!

Best wishes, Sandy