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Old 04-11-2007, 11:20 PM   #1
ljs ljs is offline
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Another piece of the puzzle

I still don't know what autoimmune disorder I have, but I had a new test come back with a positive result. Previously I had my ANA show a repeat high titer (>1:1280). Follow up ENA and complements were ordered. Previously ENA has been negative. This time RNP is showing positive. Unfortunately this isn't specific either so could be SLE or could be MCTD. I am being referred again to an immunologist/rheumatologist at at a hospital clinic where my gp has had some good success. It's going to be a few months to wait but my symptoms aren't that bad aside from Sjogren's type dryness.

 
Old 04-18-2007, 03:00 AM   #2
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Re: Another piece of the puzzle

Quote:
Originally Posted by ljs View Post
I still don't know what autoimmune disorder I have, but I had a new test come back with a positive result. Previously I had my ANA show a repeat high titer (>1:1280). Follow up ENA and complements were ordered. Previously ENA has been negative. This time RNP is showing positive. Unfortunately this isn't specific either so could be SLE or could be MCTD. I am being referred again to an immunologist/rheumatologist at at a hospital clinic where my gp has had some good success. It's going to be a few months to wait but my symptoms aren't that bad aside from Sjogren's type dryness.
ljs - I hope you get your answer soon. I have MCTD; Lupus/Rheumatoid/Raynauds and Sjogrens. My ANA was tested several times, each time coming in at 1/10240. Just a tad high, lol.

The process of testing and not knowing and finding a cocktail of drugs to help isn't fun. I'm on Presnisone, 10 mg, MTX, 20 mg and Nefedipin, 60 mg. I'm still swollen, still stiff, still tired but better than I was a few months ago. It's a long process.

We're lucky there are some medications out there to help. The side effects are not great, but living in constant pain and not being able to function is worse...well to me anyway.

Keep us posted. I wish you well........

 
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Old 04-19-2007, 06:34 PM   #3
ljs ljs is offline
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Re: Another piece of the puzzle

Thanks, NhCasey. It's going to be awhile until I see a specialist but like I said, my symptoms haven't been too bad lately. It's mostly Sjogren's symptoms causing regular problems...dry eyes, mouth, etc. Achiness isn't too bad although it's cooling down here in Australia and once winter hits that will likely get worse. From what I have read of MCTD, I don't really have too many symptoms but do have what looks like a faint malar rash and I do get mouth sores sometimes...oh yes, there is also the poor memory and concentration I have these days too. Hard to judge where that falls because I also have low thyroid (and not treated yet) so that could be related.

Sounds like you have been through lots of trial and error but I am glad you are having some improvements noe. I hope you have more success so you can feel really good again. Anyway, thanks again and I will update as I find out more...it's a very slow process at the moment.

 
Old 04-21-2007, 05:36 AM   #4
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Re: Another piece of the puzzle

Hi ljs.

When do you get to go to the specialist? It's the pits when you have to wait so long.

I have had a rough time since the start of this (November), but others have too. I guess it goes with the territory. I find myself bouncing between "I'm okay with this...and...Holy Crap, this is the pits". It's a process of finding the right medications and the right mental state for me, lol. I am definitely feeling more at ease with the DX as time goes on.

Keep us posted and good luck.

 
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