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Old 04-26-2005, 08:19 PM   #1
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tlsb2000 HB User
Question Unspecified Connnective Tissue Disease???

I previously had posted but so far noone has responded, so I hope someone out there can help out...I would like to get some imput from anyone else that has been diagnosed with UCTD. I am curious what symptoms they may have and if their diagnosis has progressed into a more defined disease or regressed??? How does UCTD effect your everyday life? Any suggestions to help w/pain?
I have had a positive ANA, then it was negative the second time around but then my double strand DNA came back with a positive RNP and Smith Antibody. My symptoms have been fatigue, pain, swelling in hands, fingers, legs, ankles and feet, bruising, some headaches. The doctor before told it if he had to label it, he would say it is fitting more of a lupus profile but he does not want to give it a name until it defines itself. I am on plaquenil twice daily and tramadol as needed currently.

 
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Old 04-30-2005, 11:32 AM   #2
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Cool Re: Unspecified Connnective Tissue Disease???

Hi,

I have also been diagnosed with UCTD by a rheumy. I have symptoms of several of the CTDs but normal blood work.....except high sed rate and Alk. Phos. I get the lupus butterfly rash, aches and pains, severe fatigue, chronic infections, etc. My primary care doc told me that UCTD usually turns into mixed connective tissue disease within 10 years.

 
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Old 04-30-2005, 11:48 AM   #3
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Re: Unspecified Connnective Tissue Disease???

Have you heard of Marfan Syndrome or Ehlers Danlos Syndrome? My 7 year old has Ehlers Danlos, the docs say wait till hes a teen to test for Marfans. They are both connective tissue disorders. His ASO tither is way over the top. Hes doing good though. They said he'd never even be able to hold a pencil or any thing, but he writes constantly now. He just started little league. Therapy has been great. But this kid is extremely self motivated and goes beyond his limits all the time. Hes a great kid.

 
Old 05-03-2005, 06:13 AM   #4
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peregrine HB User
Re: Unspecified Connnective Tissue Disease???

Quote:
Originally Posted by capp3735
Hi,

I have also been diagnosed with UCTD by a rheumy. I have symptoms of several of the CTDs but normal blood work.....except high sed rate and Alk. Phos. I get the lupus butterfly rash, aches and pains, severe fatigue, chronic infections, etc. My primary care doc told me that UCTD usually turns into mixed connective tissue disease within 10 years.
Also diagnosed with UCTD 12 years ago. What exactly is mixed connective tissue disease?

 
Old 05-18-2005, 02:56 AM   #5
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Re: Unspecified Connnective Tissue Disease???

Mixed Connective Tissue disease is where you have overlapping symptoms of lupus, RA and ????(brain fog this morning...) Doctors generally wait until one presents itself more than the others before giving a definitive diagnosis.

Quote:
double strand DNA came back with a positive RNP and Smith Antibody
These tests are almost exclusively positive with lupus. I'd get a copy of my labs and get a second opinion if I were you and wanted a clear diagnosis.

 
Old 05-18-2005, 04:15 AM   #6
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peregrine HB User
Re: Unspecified Connnective Tissue Disease???

Quote:
Originally Posted by teachergirl64
Mixed Connective Tissue disease is where you have overlapping symptoms of lupus, RA and ????(brain fog this morning...) Doctors generally wait until one presents itself more than the others before giving a definitive diagnosis.

All right. I guess this is what they are now calling UCTD - unspecified connective tissue disease.

 
Old 05-18-2005, 10:32 AM   #7
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Donte HB User
Re: Unspecified Connnective Tissue Disease???

I agree with teachergirl - There is a book called "The lupus book" written by Dr. Daniel J. Wallace. He is one of the most well known lupus doctors. In this book it states that the double stranded DNA test and the Anti Smith test are specific for lupus. With the exception of a rare few, those who have these tests come back positive have lupus. I would get the book if I were you; it's very informative and can answer almost all of your questions, not just about lupus, but about the mixed connective tissue disease and all others as well.

good luck

 
Old 05-18-2005, 06:16 PM   #8
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Skyela HB User
Re: Unspecified Connnective Tissue Disease???

Hey,

I have UMCDT I was wondering what levels your bloods came back as being

Like mine CRP 15
ESR 27 (normal range 1-16)
ANA Hep2 cell IF positive to 1:54

 
Old 05-19-2005, 01:36 AM   #9
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peregrine HB User
Re: Unspecified Connnective Tissue Disease???

Quote:
Originally Posted by Skyela
Hey,

I have UMCDT I was wondering what levels your bloods came back as being

Like mine CRP 15
ESR 27 (normal range 1-16)
ANA Hep2 cell IF positive to 1:54

O.K., I'll bite. What does UMCDT stand for?

Last edited by peregrine; 05-19-2005 at 01:40 AM.

 
Old 05-21-2005, 09:41 PM   #10
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tlsb2000 HB User
Re: Unspecified Connnective Tissue Disease???

Thank you for the replies everyone...I will definately check on the lupus book, because it would be nice to figure this out and try to find the best way to get back to as much normal activity as I can (you know be able to work, coach, be an active parent) As far as my lab levels, when I first went to Rheumatologist...Sed rate was 14, ANA was 1:160 nucleolar pattern, DNA neg, Platelets normal, RNP elevated 164, RH factor was normal. I am now on Plaquenil 200 mg twice daily and now on sulfasalazine 1000 mg twice a day along with tramadol as needed. What type of doses or meds is anyone else on?

Thanks again for the input, I look forward to further information.
Have a great day!!!

 
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