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TracyDawn
09-29-2005, 08:32 AM
I hope and pray it is anyway. I'm so sorry I haven't been around in a while, it's been a long summer for me. Long story short, I finally saw the rheumy who did bloodwork and also sent me to a dermatologist. I've developed an even worse rash on my back to go along with everything else. So they did a biopsy. Today is the day I get the results of the first part of it. She split it in half and sent it to two different labs. She also said that just from looking at it on my face and back she is 98% sure that it is lupus. And now I will find out in a couple hours.
I'm scared. Not of finding out it's positive. I am scared of them saying yet again it's inconclusive or negative. They can't help me til they figure me out and I can't take much more of this. I woke up this morning after going home from work early yesterday, I woke up in pain, rashy, itchy, feverish and SWOLLEN. My face looked like the marshmallow man. :( It's slowly going down so I can see straight but it was a scary sight this morning. After SEVEN years of dealing with this with NO help other than pain pills and inadequate drs, I finally might be helped. And I am scared. :( I really think I'm starting to lose my mind, what do you think? ;)
Anyway, I will try to be better about posting and supporting everyone else. thanks for listening (er, reading).

hippimom2
09-30-2005, 04:37 AM
Tracy, what did you find out? I hope they were able to tell you something and that they can treat your symptoms. take care

TracyDawn
09-30-2005, 04:51 AM
After seven years and many drs I have a name for it, and it's NOT hypochondriac ROFL It is indeed SLE and also a MCTD but not sure which one??? They are running more labs for that and to check my levels on the lupus issue. But the biopsy was a very clear positive! I cried with relief when she told me. Sounds weird to cry happy tears on a diagnosis like that but I have waited SO long and was beginning to doubt my own sanity. So I know I am not crazy, I was right in what was wrong with me, and I would really like to get my hands on that one dr that told me he didn't know what I had but it wasn't lupus.
Anyway, I see the Opthamologist on Monday morning and if all goes well I start treatment that afternoon! She is starting me on Plaquenil and maybe prednisone (not sure on that one yet) to hopefully get this under control. I feel like the biggest weight has been lifted off me.
When I left there I went straight to the library to get books for dh. While he's tried to be helpful and supportive, I know he doesn't understand, nor does he want to. But he doesn't have a choice now, it's not going to just miraculously disappear. So we talked and he's agreed to read what I mark for hiim that I think applies to me. That is a good first step in the right direction and our counselor will be so pleased.
Anyway, thanks for the thoughts. And for those that are still in limbo, don't give up. I wear a bracelet on my arm that I never take off that says HOPE on it. For this reason. Hope that I would get an answer, hope that I will one day feel better. So don't give up, demand answers. And if you haven't already, see a dermatologist if you think it will help you. That's what finally got me an answer.

hippimom2
09-30-2005, 02:51 PM
Tracy, I'm so glad you finally have answers and a name for what is wrong. I'm kind of in limbo. I have a lot of labs and symptoms to support a lupus diagnosis and my doctor suspects lupus, but I don't have the "official" diagnosis yet. I am on plaquenil, amitriptyline, and tramadol and they control my symptoms alright unless I am having a really bad flare. Plaquenil can take up to 6 months for a full effect. Anyway, I'm glad you finally know and are able to get treatment. Take care