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Old 12-02-2003, 01:32 PM   #1
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RBagster HB User
Should I wait for a diagnosis?

Hello and good day!
I found this site and have found it very helpful. I am 31 years young and have been complaining to my doctor for years about being tired, achey, and that everything gives me a headache. In the past year besides feeling exhausted all the time, and sometimes feeling like I was beat up in my sleep I have developed Raynauds in my hands. I have also had small quater sized rashes on my forearms that looked like tiny water blisters and took months to clear up. Now I have a smaller patch on my left shoulder blade. My doctor had my blood tested twice (a few months apart) and both times it was positive ANA but my sed rate is ok. My urine tests show high white blood cells but I have no infection. I also have embarrassing bowel problems and pain. Currently my left hand and thumb are giving me heck, it gets better during the day but when I wake up in the morning it is too painful to untwist the toothpaste cap but it looks fine (not swollen). I have a swollen thyroid most of the time but TSH tests are fine though it did go superhyper a few years ago. And lastly I have had 2 miscarrages (1st and late 2nd trimester).

Here is my question - I have a hole in my heart that I'm getting fixed in february at the Cleveland clinic. My doctor feels that is the cause of all my problems because my ANA test was not definitively positive, and he says rashes typically show up on the face, and my arthritis tests came back fine and so has made me feel like I should not be concerned about having Lupus even though my symptoms have magnified in the past year. I've read as much as I can and it seems likely that I have Lupus and would like to know for sure so that when I need to take a nap at 1:30pm I don't feel so guilty about it.... Am I nuts? I haven't called the doctor about my hand because I'm starting to feel like the girl who is searching for a disease (for attention). Could I ask the Cleveland Clinic for a consult once I'm there? Or should I just wait until the hole is patched to start pushing my doctor to send me to a specialist? Thanks for listening, everytime I get bummed about a particular ache or pain someone tells me - "It's probably nothing, you probably don't have Lupus or everyone has aches and pains (which I know)" then I feel worse....

-RBagster

 
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Old 12-02-2003, 06:23 PM   #2
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AngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB User
Re: Should I wait for a diagnosis?

Hi RBagster and welcome

I don't know if you have had the opportunity to read posts in this forum regarding something called Antiphospholipid Syndrome. It is also called Hughes Syndrome, or "Sticky blood". What happens in someone that has this disorder is that the body causes clots to occur all over the place. And with those clots, come symptoms of "brain fog", migraines, miscarraige, stroke, TIA (mini stroke), DVT (leg clot), etc It can cause some awful things to happen if left untreated. Some of the Neurological symptoms that you have described here (the miscarraiges, tingling etc) could be caused by that. I also feel that you have the symptoms of Lupus, and the blood work too! APS can go with Lupus hand in hand. Have you had this hole in your heart for a long time? I don't know (based on what you said) that the heart problem is causing your ANA to be positive. Often these doctors will blame anything and everything! Do you get pain in your lower back? It would be such a good idea if you could get into a Rheumy at the same time. The surgery for the hole in your heart can throw you into a flare, so be as cautious as you can! ANd see about getting into a Rheumatologist ASAP.

Oh- and the ANA being negative isn't an issue, many people with Lupus have a negative ANA until they are so sick that they end up in the hospital, then it comes back positive. So basically, you can have the symptoms without the blood work! I really hope that they can figure you out!! I am not sure what kinds of symptoms having a hole in your heart can have, but I am not sure that all of your problems are explained by that. Please take care and ask as many questions as you need to Talk to you soon!

~Angelic

 
Old 12-05-2003, 09:26 AM   #3
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Join Date: Dec 2003
Location: New York
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RBagster HB User
Re: Should I wait for a diagnosis?

Thanks for the information. Actually my ANA test was positive both times but was low. That's why I'm frustrated about a lack of diagnosis because the more I read about symptoms, the more I'm convined that it's not all in my head especially when my bloodwork shows something is there. Thanks for your help.
RBagster

 
Old 12-05-2003, 10:23 AM   #4
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AngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB User
Re: Should I wait for a diagnosis?

Oh I can assure you that it isnt all in your head. I am becoming more convinced that it is all in the DOCTOR's heads!! haha No really, I hear this all the time. And it is so sad because its usually NOT in our heads!!

The positive ANA is confimation enough becuz you have symptoms too. I would try and find someone good to look after you. Someone that believes you etc. Hopefully you can see someone when you go in for your surgery!!! You take care okay? Talk to you soon,

~Angelic

 
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