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Old 04-30-2003, 04:14 PM   #1
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Join Date: Apr 2003
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Amberylie HB User
Post Will I ever have a full diagnosis?

Hello, I am posting to this board because I am sure many of you have gone through crap for years and years too. I do not have lupus, as far as labs and other things have shown. I have had a long history, but am now morbidly obese so many doctors blame my pain and fatigue on my weight. When I was a child I had a lot of upper respiratory infections and had those up to about a year ago. I started having joint pain in my wrists and fingers at the age of about 13 and would get weak and tired often. Had a borderline ANA, and in my pediatric files there is notation of my mom taking me in for concern of a butterly rash. I was thin then. I have a nice rheumatologist I saw a few years ago and am seeing now. I have my second appt. on Monday. I have arthritis in my ankles and lower spine. Bone scan showed uptake in both my wrists as well. Have to see x-rays on monday to see if there is anything there. In the last 4 years I have had a couple borderline and one low positive ANA result. My ESR is always elevated to some extent. My poor rheumy still never came to a conclusion about my diagnosis, and didn't consider the old childhood butterfly rash because it was so long ago. On mom's side (mom's mother has RA, and her mother was just diagnosed with Lupus at 84). My other great grandma who passed several years ago had Lupus as well. My rheumatoid factor is negative, but last time was one point below where it would have been a positive. I generally do not get red hot joints or anything like that. I have had symptoms of raynaud's since childhood too. I recently had an arterial doppler that showed some mild occlusive disease related to my feed and hands, so I will have to see what the rheumy has to say about that.My cholesteral has always been fine so I am not sure what is causing that. I would just like a proper diagnosis for this hodgepodge of symptoms. I don't have fibro, he checked me for that too. I am so scared I will never have a full diagnosis and proper treatment until it might be too late. Just needed to vent.
Peace

 
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Old 04-30-2003, 06:58 PM   #2
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Join Date: Apr 2003
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Cadet Janice HB User
Smile

It stinks not having a difinative diagnosis. I had my health problems from my early teens and I was told that I was just suffering from a case of typical teenager laziness. Ok great doctor huh. They did no testing then and I didn't even bother with doctors until I got with my husband and I realised I had to do sometimng. I was diagnosed with probbable Lupus 10 years ago and then this year I was positively diagnosed with Lupus. 10 freaking years. Ok whatever. I had been reciving treatment for lupus all those years but it took them this long to say yep its the wolf.

I hope the doctors figure out whats going on so they can help you out. Just don't give up. Sorry I don't have any thing earth shattering to say. But just know you are not alone.


 
Old 04-30-2003, 09:20 PM   #3
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Join Date: May 2002
Location: Ohio
Posts: 222
Denise F HB User
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Dr's can treat the symptoms with out a definite
diagnoses. In fact it could be good not to have a positive diagnoses of Lupus in your medical files.
In this day and age with all the problems with health
care if you lose your health insurance getting another
policy would be almost impossible with that little
5 letter word LUPUS. Just a thought.

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