parvenew Registered User
Posts: 1
(3/21/04 2:34 am) Reply
hi, I'm semi diagnoised...
Hi there.
I'm Dana, I'm 18 and am in my last few months of high school.
Since I was four, I have been sick. I'd always get the doctor run around..everything from the strange pains in my stomach were from a pulled muscle to the pain in my hands was from over use of the computer.
About nine months ago I finally saw a competent neurologist who, with the aid of like a million tests, has generally diagnosed me as having: an autonomic nervous system disorder, a myopathy, orthostatic hypotension, ploy cycstic ovarian sydrome.
Basically, I'm in pain all of the time in my extremeties, I can black out when I stand or otherwise move my body, cannot control my heart rate (causing absolutely painful palpatations), should never have children lest I infect them with my disease, my heart rate goes under 55 bpm sometimes, my muscles are probably wastng, and I have spasms. I take medcine for the pain, but I still feel horribly weak. I have lots of other related symptoms, too.
Oh, and recently I was diagnoised with acid reflux disease.
Phew, that was a lot..okay I just wanted to introduce myself and have the oppertunity to tell this all (or at least some of it all) to people who wont saying I'm a hypocondraic or be sccared off.
Yes, so..hi!
I haven't posted here yet. I'll get to that after I post this here.
Not sure if anybody comes here anymore, but you just posted this a few days ago, so that gives me hope.
I would just like to tell you I know what its like to be the "hypochondriac". Even though I truly am in pain all the time, I almost never tell anybody anymore. When I first started having problems last summer, people were concerned. Now, if I were to complain they would say I'm overreacting or being a hypochondriac.
It's really frustrating having this happen so much. I'm hoping that people on a board such as this will be more understanding.
Good luck to you.
~*PANIS ET CIRCENSE*~
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parvenew Registered User
Posts: 2
(3/24/04 1:17 am) Reply
Re: hi, I'm semi diagnoised...
well hi there!
Yeah, the hypocondriac routine is old.
I've been sick since I was four (did I say that?) so everyones pretty tired of it. Even my family. My mom tries though but she enjoys me being sick and thats another conversation.
But good to know someones here!
Re: hi, I'm semi diagnoised...
hey I'm here, sorry, Ive been so sick. You guys may wany to check out this board too even though you dont have the exact diagnosis...you are so similar you would be welcome. I use to moderate over there. They are very active. You can to to their EZboard forum from the web page
www.pediatrinetwork.org
anyway, I'm Sharon. I have polycystic ovarian also. the pain you are talking about sounds like fibromyalagia...especially with your other cluster of stuff. It's very common in people with dysautonomia. You can find some info about it on the pediatric network web page, along with a ton of great dysautonomia info. I have both of those diagnoses too. Along with endometrosis, Arnold Chiari Malformation, GI motility disease, etc etc. You can get to my web page and see a lot of my info and my story if you click on the welcome sign on the top of any of the pages in this forum.
I know how awful it is to not have people beieve you when you are telling them what is wrong with you. No matter what dont doubt yourself. And dont stop telling people close to you the truth, if all you do is stuff your feelings it kills you inside eventually. You have a right to express your feelings and if other people wont believe you you have to beging to think about the healthines of those realationships. You deserve to be believed...talk here, keep up as much of a real life as you can. I got sick really young also and no one believed me either, they even tried to psych hospitalize me twice at age 11 and 16 both times I got out AMA. But eventually I stopped telling anyone how I felt, and stopped having emotions, I went numb and believe me it's taking lots of therapy now, after I had a baby and the hormones spiraaled me into depression to undo the damage that was done.
anyway. it's nice to see you guys here. sorry for not stopping in to introduce myself sooner
~sharon
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~'There isn't anything that happens that can't teach us something,' she said, ' that can't be turned into something positive. One can't undo what's been done, but one can use it creatively.' ... 'Scar tissue is the strongest tissue in the body...So I shouldn't be surprised if it's the strongest part of the soul. ~ Madeleine L'Engle, A House Like A Lotus ~~~~~~~~~~~~~~~~~~
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