Too Much On My Plate

[Victoria]

I've been bombarded with so much stuff lately I don't even know where to start. At this very moment I want to wave the white flag and surrender. Maybe tomorrow will be better.

I saw the cardiologist at the U (even though I have my own cardio) and thankfully, he also deferred me to Dr. Grubb. But I received a letter in the mail Sat. from this cardio, and along with my other diagnoses he decided to add that he believes I have somatization disorder. Why do so many docs think they're board certified psychiatrists? I figured this was coming because he pointed out that my BP and HR were normal at my appt. and he also stated having symptoms while turning over in bed or while sitting does not fit the picture of someone with an autonomic problem. This really irks me, but I'm trying not to take it personally.

I had an endoscopy/colonoscopy Thursday (I have Barrett's Esophagus from untreated acid reflux) and even though they snowed me with Demerol and Versed I was wide awake for the whole procedure again. Ooooooo, the agony! They ended up having to give me oxygen for about an hour because after they changed my position on the table my HR went from 61 to 90 and my oxygen from 96 to 82.

I'm still feeling awful from the Demerol and Versed and got myself into a bit of trouble today. I was in town with my two Granddaughters and I started getting that sinking feeling along with severe muscle pain in my pain. Next thing I knew my heart felt like it was being severely overworked (I could see it beating through my shirt), I couldn't hold my head up and I had to sit/lie down. It was that intimate "death" feeling I always get when I start circling the drain. Thank goodness my oldest Granddaughter has her permit or I don't know what I'd have done. I should have known better than to risk an outing after a procedure like that.

I'm not looking for sympathy, I merely needed to vent to those who can relate.

[lieze]

I'm sorry you're having such a rough time.

My heart goes out to you.

[sue1234]

That's awful and degrading! I know I feel somewhat humiliated when I get that doctor speech of they "just don't know". It might all be in different words, but amounts to the same thing. It's hard on us when our symptoms are so subjective.

And, about the rolling over in bed thing--I get that too. I have read on a pheo board where plenty of them get it too, from rolling over. AND, on my carcinoid board, some of them have mentioned how different positions causes a release of histamine and causes their flushing symptoms. So, your doctor doesn't know what he is talking about. No, maybe what happens when rolling over is not directly related to the orthostatic issue, but it is indirectly related to POTS or you wouldn't have either problem.

[issie]

Hugs to you. Sorry that this happened. I think all of us have at one time or another gone through this before the doctors understand. Some of them never try to understand. But, just look at it as ignorance on their part - they just don't know.

You're not alone with the turn over, position change stuff. I do that too. I agree with Sue - they just don't know. You can write a letter saying that you disagree with that conclusion and say why and ask for it to be retracted. If they don't retract it, at least your letter will be in your file.

[HopeSprings]

This really ticks me off. "It doesn't fit with autonomic symptoms" ??? Uh, yeah it does. Obviously if he is referring you to Dr. Grubb -- he doesn't know much about dysautonomia or he'd be able to help you himself. This happened to me early on when I was having tons of cognitive problems. I was referred for neuropsych testing and she found profound short term memory loss and some other cognitive issues... not psychiatric ones.. brain processing problems. Her diagnosis? Somatization disorder. So can I ever show these results to another Dr.? NO because they could be influenced by her lame diagnosis. This "disorder" should be called "I Don't Know Why You Are Having These Symptoms, Therefore They Must Be In Your Head Syndrome." I was planning to post a message about tachyardia sitting up. I just recently discovered it is not only when I stand up to get out of bed, but happens just sitting up in bed. I know that "iminent death" feeling too. It's very unique, unmistakable and scary. I hope you can disregard what he said as just an uninformed statement from yet another ignorant Doctor.

[Victoria]

You are all an incredible support to me. Thank you so very much.

I had extensive testing at two separate facilities (one was a very prestigious clinic) to rule out somatization disorder and/or malingering, and I passed all of them. All of my physicians have access to my past and recent medical records, including the psychiatric testing. This guy should have taken the time to read before he put that erroneous entry in my records.

I will be writing a letter to ask that this entry be removed.

[juliegee]

I have so much to add to this, but not feeling up to it... You KNOW the doc is wrong. Believe yourself, Victoria. I do.

Hugs-

Julie

[cnm1]

Unfortunately - EVERYONE with these illness gets told this at some point When my daughter got sick, they said it must be mental because she was not getting better - what does that mean. She went through 5 - yes 5 separate psych evaluations. Each one said they thought this was a physical disorder SOOOO the pediatrician would insist on a 2nd, 3rd, 4th then 5th opinion.

THEN one of psychologists LECTURED ME that I needed to be more assertive with the MDs since it was obvious this was a medical conditon!!!!!!!!!!!!!!!! I thought I would loose my mind!!!!!!!! WE could not win!!!!

I see this all the time with pts. I am a nurse midwife. Pts with chronic pain are told it is "stress" all the time. Sorry you had to go through this but it is thw way MDs are taught. If in doubt - blame the pt.

Louise

[Guest tearose]

I am so sorry that you were put through this!

Many of us have had to deal with the knuckleheads in the mental health profession assuming we have a mental illness.

You will not be able to have any thing removed from your records. Once it is there it stays. The only thing you are allowed to do is write a letter and state that you want it included in your records attached to the false entry. You MUST find out who to send your letter to or it will NOT be attached. Seriously, they have a separate file of a patients "correspondence" so if you want to your corrections to be in your file, get to the right records keeper.

It is a horrible injustice that you had to go through. Muster up the strength and energy and write your letters to protect yourself.

tearose

[ladyt]

I am sorry u had to deal whit this.. My journal is ridled whit wrongs. Down to things about my family and when i got my diagnose (thats facts, but still they gett it wrong) Its frustraiting beiond belife...

Like the docs thinking i had a nero exam ust cos i visited an nero doc. I didnt, she said i belong at the cardio doc. Very thourog exam

Hang in there...

[potsgirl]

Hi Victoria,

I'm so sorry you're going through all of this. Stress certainly exacerbates our symptoms, and none of us needs that! Know that you're in my thoughts and I'm sending positive energy your way.

You take care of yourself!

Jana

(ps...may be back in IA at the end of the month)

[gertie]

I'm furious you are having to go through this. When I first started having symptoms 25 years ago that was the first thing I heard from every dr I went to.

I was so humilitated by them I stopped trying to find help until I was to sick to get out of bed. I was just recently diagnosed with Dysautonomia/POTS & the dr couldn't believe I had been suffering this long & not one dr knew what was wrong with me. I had hoped things had changed in the last 25 yrs & that dr's were more caring & attentive.

[Victoria]

Sending a collective thank you to all who replied. I've since composed myself and finally have my medical records ready to mail to Dr. Grubb.

Alicia, unfortunately nothing has changed in the medical community. I've been actively searching for a diagnosis for 29 years. But I'm absolutely positive my life will take a turn for the better once I get to Ohio.

You are all awesome.