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Symptoms Of Scleroderma - Question


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#1 autoimm2much

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Posted 07 October 2007 - 08:02 AM

I had a scleroderma blood test drawn by my neuro about 9 mos. ago. It was ruled out. I went to a GI spec, for digestive tract dysfuction on Friday, and he ordered a scleroderrma blood test anew. Won't have results till later this week.

Question: Has anyone here w/ scleroderma ever been tested negative, exhibiting symptoms, then later tested again and tested positive>

I already have MS, and have had for a number of years. Both the doctors who have tested me for scleroderma have suspected it due to the appearance of my skin.

Thanks

#2 jefa

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Posted 07 October 2007 - 08:13 AM

Hi, Autoimm2much and welcome to the ISN Sclero Forums. Yes, it is possible to test negative with symptoms (many never test positive). It is also possible to test positive while never exhibiting symptoms or to change back and forth over time or to change patterns over time. At least you are already in the system with a doctor who is looking for the right things. Here is our page on Multiple Sclerosis - there is a section on overlap with Scleroderma. Keep us posted on what's happening.
Warm wishes,
Jefa

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#3 Sheryl

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Posted 07 October 2007 - 08:27 AM

Welcome aboard A2,
I look forward to learning more about you. I have always tested negative to all the Scl70 screenings. Sheryl
Strength and Warmth,
Sheryl

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#4 janey

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Posted 07 October 2007 - 11:22 AM

Hey Darlin',
Welcome to the forum! I certainly agree with the others in saying the you can test negative and have scleroderma as well as test positive and not have it. All my scleroderma blood tests are negative, but my aldalase and ANA are positive neither of which "identify" scleroderma. I found the following on our antibodies page where it gives a prevalence of specific antiboides in SSc. For example, it states that the anti-SCL-70 antibody is on prevalent in 30% of dSSc patients. I know my rheumatologist went more by my symptoms than my bloodwork.

Again, welcome. Please let us know how you are doing and the results of your tests.

Big Hugs,


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#5 summer

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Posted 07 October 2007 - 12:56 PM

Hi,
Welcome to the forum, you will find people here to be friendly and informative.
I have tested positive for ANA and also Anti-Centromere antibodies, I also have clinical symptoms for Scleroderma, although no skin involvement as yet
Everything is internal at this stage.

Take care
Celia :)

#6 autoimm2much

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Posted 08 October 2007 - 04:09 PM

Thank you Jefa. Sheryl, Janey and Ced, for the warm welcome and the information. I had to go back to the GI doctor today he'd planned to to take biopsies of stomach and small intestine. He got in there with the endoscope and said everything looks normal, so he he didn't take any samples..

What was really good about the whole thing though was, it gave me a chance to ask him about the sleroderma blood test he'd order on Friday.... now armed with the information you had given me over the week end.

He said "Oh yea, that test in unreliable. I wrote in your record (last Friday) that I recommend you see a Rheumatologist. When Dr. Lee (my primary care physician and referring doctor) sees that, she will refer you to a Rheumatologist."

I'd like to get all these, yet, very foreign sounding tests done and figure out what to do about all this by Jan. first, as I have met my insurance out-of-pocket for the year.

Thank you all very much, I plan to stick around and read as much as I can while I wait to find out if this is indeed scleroderma.

#7 jefa

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Posted 08 October 2007 - 07:29 PM

The rheumatologist will undoubtedly order the ANA panel as part of your first appointment. I don't know what kind of scheme you are in, but hopefully you can request an appointment in time to make your insurance deadline. Or you could ask your primary care physician to give you the blood test anyway to save time.
Warm wishes,
Jefa

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#8 Sheryl

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Posted 09 October 2007 - 12:18 AM

A2, Your primary care physician can order Echo's and CT's and any other blookwork for you. Colonoscopy is yet another test done every 5 years or so depending on the diagnosis. Usually, either every 6 months or yearly you will need Echo's - CT's - Pft's and the hallwalk. If you can get them scheduled for Nov. or Dec. you should be set for the upcoming year then. Good Luck
Sheryl
Strength and Warmth,
Sheryl

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#9 Sweet

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Posted 09 October 2007 - 09:09 AM

Hi Autoimm2much,

I am so sorry I missed this post. I'm a little late, but I wanted to welcome you to the sclero forums!!!
Warm and gentle hugs,

Pamela
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#10 susie54

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Posted 10 October 2007 - 12:43 AM

Hi ,

Welcome and sorry you are going through any of this. I also was diagnosed with MS four years ago but along with that they knew I had some other disease going on. I was diagnosed with MS because of symptoms, lesions showing up in brain and oligoclonal bands in spinal fluid. BUT it turns out as time evolved , it was related to my other problems which finally got diagnosed as Mixed Connective Tissue Disease with lupus/scleroderma mix. So that is how it stands now. I think MCTD comes on with a neurological beginning. Hope you get some answers but be patietnt. It may take awhile when you have multiple things going on. Susie54

#11 autoimm2much

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Posted 10 October 2007 - 06:11 AM

Thank you Jefa, Sheryl, Pamela, Susie- you (and others here) are truly a wealth of infor.

Monday, my primary care physician told me there is only one rheumatologist in town, indeed in the state who doesn't take patients unless their immune blood test (the one I took at GI's office) comes back high or, positive, or whatever the right term is that shows possible possible scleroderma. I have a feeling the test will be neg., as the one done 9 mos. ago was neg. too. Been feeling at my wits end with all this anyway, hearing about the rheumatologist didn't help one bit.

Anyway, I heartily appreciate the sugg. to have my primary care physician do the other testing, that I will ask her to do. Wish me luck, as when primary care physician told me this, she didn't offer to to the other testing.

Susie, lupus is an awful diagnosis (of course so is scleroderma!), I am sorry. Before your diagnosis was changed from MS to lupus, did you ever get on one of the MS modifying drugs? They are, Betaseron, Avonex, Rebif and Copaxone. One new one has been added to the "stew" since your diagnosis has been changed. Anyway, the reason I ask is I didn't start having the GI tract problems until I started Copaxone... but there are no reports that it can cause any other autoimmune problems, although, I still remain somewhat suspect of Copaxone.

#12 WestCoast1

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Posted 10 October 2007 - 07:29 AM

Hello there Autoimm2much,

I am a little late in the game, but I wanted to welcome you to the Forums! I hope that you find lots of info on the ISN and we are always here to share a hug, or some experiences.
*WestCoast*

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#13 susie54

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Posted 10 October 2007 - 07:29 AM

The only interferon my neurologist said I could take was Copaxane, the others would cause problems with the MCTD> She also wanted to put me on pulse IV steroids at the time but I refused. I have held out on prednisone because it has so many side effects but now I have to take is during flare ups with my MCTD.
I hope you find all your answers and YES, I would have taken interferons with MS if I had been diagnosed with it. I will tell you, I took all my films and got a second opinion with a MS specialist when I was diagnosed with MS. That is the one who said he thought it was more than just MS. Susie54