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Finally have a DX !


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Hello,I had my follow up with Dr. Fealey from the Mayo Clinic and finally have a "name" for all my symptoms.I have POTS.As crazy as it might sound,I am so relieved to finally know.I have went thru 17 years of misdiagnoses,Drs telling me I am crazy,depressed or have emotiomal problems that it is such a relief.I have hope again,something I have not felt in a long time.With the POTS he also dx me with Fibromyalgia,Chronic Fatigue and dry eye syndrome which "might turn out to be Sjorgen's" as well as bladder problems.Is it crazy to be so happy about being having all this?Not that I am happy to have it,just happy to know! Thank you all for your support and information you have shared on this board.It has helped more that ya'll will ever know.Take care,Melanie :)

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Melanie, I completely understand why you feel happy...you have just been told that all you've been reporting to your docs all these years are VALID issues. I can only imagine your relief!

I felt similarly when I was finally diagnosed with dystonia of my gallbladder after 6 years of being told there was nothing wrong despite intense pain... I actually started laughing when the doctor told me it would have to come out within the week! He said "that's an unusual response" and made a funny face. I said back, "no, I'm so relieved to find out that there is a REAL reason that I've felt so terrible and you can take it OUT." :)

That validation feels pretty great, doesn't it? Doesn't change the fact that you've now officially joined our ranks though :) but at least you have all of us as your friends to help you through. :)

Nina

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I know that feeling of relief when you finally get a diagnosis that explains everything. I was told I had many things including anxiety and depression which I concede I did have because I didn't have a diagnosis and I found most of my doctors pretty unsympathetic and difficult to deal with--that is called reactive depression (to an illness). I just wish there were more effective treatment options for POTS.

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man, melanie that's great, but how did you get into him. i have all those problems and he refused to see me because of them! he sent me a very patronizing letter about how he doesn't deal with chronic fatigue and don't i have a doctor where i live capable of dealing with it. i was seething mad. i wrote him a scathing letter about how my doctor wasn't asking him to see me for cfs, as it is not a real issue with me, and he was a jerk not to even look at my records. i got a two sentence letter of apolgy, but no appt. i'm glad it worked out better for you. it is a relief to have a diagnoses. no one wants to be sick, but it's worse being sick with no diagnoses. hope they find the right combo of meds for you. morgan

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Morgan,the only thing I can tell you is that I had a very determined PCP who believes in me and fought very hard to get me in.I had a long wait.I was accepted at Mayo in Nov. 2003 but was not given an appt. ,just put on a waiting list.At that time I was told it would be no later than Feb.2004.Feb. came and went with no word so I started calling them every week asking about the status ,where was I on the list.I finally got in April 22.I did not have any dx at the time,my neuro thought I was having emotional or mental problems,rheumo dr told me fibro and there was nothing he could do for me.I had been tested for every disease known to man except for autonomic testing.I had been told I had Lupus but 15 years later found out I never had it at all and then MS early stages.Am I ever glad that one was wrong too!If it were not for my PCP,actually a PA who is very young,I don't think I would have gotten in.He called,told them all the test I had,my symptoms and how they affected my life and that he was at a loss as to where to go next in dx's me,could they offer any advice.That is what did the trick.I don't know why you can not get in because of the CF.They were great while I was there.I had a 2 hour initial consult and testing started right away. The only thing that upset me at all while I was there was the fact my DR could not see me before I left.They set me up a appt for a phone consult and I left not knowing anything.Dr called me a week earlier than my appt tho and took an hour to go over each test and DX and answered all my questions so it all worked out ok.I am sorry you can not get in.I would try again and have your dr stress your problems and why you need to be there.Good luck,I hope things work out for you,Melanie

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melanie, thanks for your input. my pcp did call twice. and sent records of every test known to man i have. but even after the apology, they refused. just don't know why. wouldn't want to go there now. have talked to dr. robertson at vanderbilt and they are scouring my chart to see if i fit any criteria for research, mainly baroreflex failure. so keep your fingers crossed. thanks again for input. :angry: morgan

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