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They are not sure what I have


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#1 janeygirl

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Posted 13 March 2008 - 07:28 PM

Hi All
Well I went and saw my specialist on the 15th feb and he now thinks I dont have linear morphea ( en coup de sabre ) he THINKS I MIGHT have cutis verticis gyrata, what ever that is?... I know a lot of you have had the same thing where you dont get the proper diagnose but it's sooo annoying... You worry your self sick when they tell you the first diagnose, then study up on it, then try and get your head around it which takes ages, then deal with it, then get told you might not have that you may have something else :angry: .. It drives me crazy.. so do I study up on this and go through the same process or sit back and wait and see if he changes his mind again.. Yeh I guess you can tell im letting of steam.. I just feel lost and dont know what to do.. Any suggestions?? :unsure:
take care

#2 Fictionite

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Posted 14 March 2008 - 05:48 AM

I know, I know. I call it the medical merry-go-round with a different doctor, test or diagnosis at each stop. I can't even remember each bizarre, and totally wrong, diagnosis. I was even told that I had kidney disease, and after contacting my family & friends with one week to go before starting dialysis, I got a call one night from a doctor (who just happened to be studying the test results) and was told that the "lab" made a mistake and that my kidneys are in great condition. Lovely, right?

Like you, I researched each diagnosis before it was eliminated from the competition. I can't help myself - I'm an info junkie. BUT, what I learned after the kidney incident was to do the research, but not get too stressed over the diagnosis until I knew for sure. Of course, I'm sure you know that this is almost impossible, but I did try.

In my case, I think all those doctors could sense my desperation to get an "answer" - to know what was wrong with me. In the process of thinking out loud and tests to rule out different possibilities, doctors sometimes add to our frustration. I don't know if any of this is helping you, but hopefully you'll know that you're not the only one who goes through the "now you know it - now you don't" game.

Just hang in there the best you can, and if you feel like you're getting the run-around, speak up or change doctors. And, come over here to blow off steam any time. We can handle it because we have all been there. I'm still there. Ha.
~LeAnn

#3 Guest_SADIE_*

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Posted 14 March 2008 - 08:01 AM

I'm so sorry to hear you're going through some rough times. I wish I could help you out. Just keep after your doctors to get the right diagnosis. The sooner it's diagnosis the faster they can treat you.
Sadie