It's all in my head!? arghhh!

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lucysgd
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Date Joined Jun 2008
Total Posts : 669
   Posted 3/3/2009 2:38 PM (GMT -7)   
Having a minor vent here.  My pcp referred me to a hematologist to check for polycythemia.  My hematocrit has been creeping up and staying above normal, which can be a sign of polycythemia, which my mother has and is controlled with regular phlebotomies.   She had an eyestroke and lost vision in one eye - and if my blood is getting too thick, I'd like to know.  I don't need any more problems - especially undetected ones. 
 
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! 
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 3/3/2009 2:43 PM (GMT -7)   

This is me again.....and mind you - I was only seeing him for the polycythemia rule-out.  He asked all the questions.....brought up all the fibromyalgia/rheumatology stuff, wanted to know how it started, who said what, what my symptoms were yada yada.   I simply answered his questions.  Geesh - I think I'll go eat some chocolate! 

Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 3/3/2009 5:25 PM (GMT -7)   
Lucy, you are facing what all of us have been through. I don't think there's a single person here who hasn't heard, "It's all in your head, now stopping making things up."  I spent a couple of years hearing specialists say that to me.  I wanted to kick each of them in the nards.
 
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
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 3/3/2009 6:49 PM (GMT -7)   
Lucy,
I just made mayo mad, so I feel you. They wanted to send me to "pain management camp" which is being committed to a facility, forced to work and exercise and diet, denied pain meds and forced to take psychiatric medication. They claim they have a great success rate since 97% of people leave there on no pain meds (THEY WONT GIVE M TO U!) and about the same percent claim the program helps tremendously (I'd say ANYTHING to get out of there). I found out today that what he called fibro, just in my one hip an leg mind you, is actually a pinched nerve that needs surgery because I'm losing the ability to lift my toe! What an a88.

The hematologist is doing the same thing I have been going through and I know its so hard to get a referral to a hematologist, but somehow, you need a second opinion. I don't think you need a referral for that, since you already had a referral to one. I don't know. But I'd fight if you really feel something is wrong.

I know we second guess ourselves because they totally undermine our clear logic. The sad fact is, docs are lazy lots of times, since their profession is pretty much unregulated as far as requiring tests and you can't sue em anymore, at least not easily.

I know I have a test that showed possible lymphoma three years ago and finally, after complaining to mayo about a lack of advice on the subject, am finally going to see an oncologist. At least I may get some questions answered, maybe an updated test. I know they can't rule out me getting lymphoma in the future, but I'd sure like to knw what all those lit up spots are on my gallium scan.

I was a medical assistant long ago, I know what you mean about knowledge. They often don't care so much because they don't have it, I think. If they had it, they would understand. And the guys really bending over backwards to call you a kook when really he has been caught not doing his job as well as he should.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


alienwife
Regular Member


Date Joined Feb 2009
Total Posts : 108
   Posted 3/3/2009 9:01 PM (GMT -7)   

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

AlienWife
There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.
Albert Einstein
Dx: SCLE, Sjogren's, Reynaud's, Peripheral Neuropathy


alienwife
Regular Member


Date Joined Feb 2009
Total Posts : 108
   Posted 3/3/2009 9:03 PM (GMT -7)   

By the way . . . how was the chocolate? Need more? I have a Belgian mother in law who sends chocolate on a regular basis ;)


AlienWife
There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.
Albert Einstein
Dx: SCLE, Sjogren's, Reynaud's, Peripheral Neuropathy


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 3/4/2009 11:29 AM (GMT -7)   

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. eyes

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

Thanks all for the encouragment!

Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 3/6/2009 7:31 AM (GMT -7)   

Lucy,  how insulting to be treated like that by anyone, much less someone that you went to for help.  If it's any consolation, many of us have been accused for it "being in our heads" for various ailments, but especially for AI disease.  My mother had MCTD and was told for years that her symptoms were in her head.  She died of interstitial lung disease as a complication of MCTD in 2000.  By the time her doctors took her seriously, her disease was very nicely progressing. 

If you're still concerned about the blood issue, please go seek another opinion with another hemotologist.  My sister has low WBC and platelet issues, and her first hematologist was a kook.  She was tempted to just give up and let it go, but I talked her into getting a 2nd opinion; she finally found one that she respects, and is doing quite nicely on a medication that helps her blood counts. 

check out this t-shirt:

http://t-shirts.cafepress.com/item/lupus-warning-womens-long-sleeve-tshirt/89324736

I think that about sums it up for me!  I'm so blessed to have a great rheumatologist who listens to me is not patronizing or condescending. 

El


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Methotrexate, nexium, tramadol, nasonex,Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan, zyrtec, zegerid, aciphex


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 3/6/2009 10:36 AM (GMT -7)   

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!  yeah   Sorry about the long post ----- I guess I'm still working on getting this out from under my skin!!!

Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


alienwife
Regular Member


Date Joined Feb 2009
Total Posts : 108
   Posted 3/7/2009 6:51 AM (GMT -7)   
Lucy, vent all you want . . . we have all been there, we all understand . . .

El, i LOVE that shirt! me thinks i might have to get one . . . if i had a dollar for every time i heard "its all in your head" i would be a VERY rich woman
AlienWife
There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.
Albert Einstein
Dx: SCLE, Sjogren's, Reynaud's, Peripheral Neuropathy


conorsmom
Regular Member


Date Joined Feb 2009
Total Posts : 20
   Posted 3/12/2009 11:13 AM (GMT -7)   
Oh, can I relate to your story. When I first got sick, about 17 yrs ago, I went to a rheumatologist affiliated with the hospital in which I worked as a RN.  He saw me, without any of my labs or Xrays, etc. I already knew I had a +ANA, false-pos.VDRL, plus daily low-grade fevers, joint pain and extreme fatigue. He said I was working too hard, and maybe I should see a psychiatrist because my father was bipolar. I left in frustration with an NSAID prescription. I never went back.
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
Diagnosed with SLE 1994,Fibromyalgia 1994,Interstitial Cystitis 2000,lupus pneumonitis 2002,peripheral neuropathy 2002,cerebral anoxia 2007,
 
I can do all things through Christ who strenghthens me. (Phil 3:13)
 
 
Go Gators!

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