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Confused and worried


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#1 Lilly123



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Posted 13 December 2012 - 02:19 PM

Hello everyone here,

I wonder if you might be able to help. My doctor sent me results with no interpretation. I have been having various symptoms over the last two years since having my baby. I twitch all over, and have transient pain in my muscles and joints. My doctor ran a bunch of immune tests and found a positive SCL-70 of 6.7 and a negative ANA. I am wondering if this has to be watched. Am I likely to get scleroderma in the future? I would appreciate any input. I am terribly worried.

#2 Shelley Ensz

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Posted 13 December 2012 - 05:06 PM

Dear Lilly,

Welcome to Sclero Forums. I'm sorry you have concern regarding your positive SCL-70. It is your doctor's responsibility to explain the test results to you, taking into consideration your entire medical history. It would be a great idea to schedule a visit with them to discuss this, and take along a list of your questions.

As it happens, it's possible to have a positive SCL-70 and not have or develop scleroderma, however, it would definitely be a risk factor, so you should have a thorough medical exam (if you haven't already). Things like general twitching and transient pain don't "count" towards a scleroderma diagnosis but an exam or further testing might reveal things like tight skin, pulmonary fibrosis, Raynaud's, or certain esophageal issues (etc.) that might lead to an eventual diagnosis.

A percentage of all lab tests are just plain wrong, so your doctor might also repeat the test to be certain that it is "really" positive. Most of us felt pretty stressed when our doctors first brought up the subject of possible scleroderma, so what you are feeling is entirely normal At this stage, try to keep in mind that the test result could be just another lab error, and that unless some very specific scleroderma symptoms develop, the test result is basically meaningless.

I know none of that is terribly comforting, because you are also probably searching trying to find out why you haven't felt well for the past two years. But a hefty share of people (about 50%, I think) may develop a few symptoms of connective tissue disease(s) and/or have some positive bloodwork, without ever going on to develop a full-fledged disease of any sort. Plus it takes an average of six years for women to be diagnosed with systemic scleroderma. Either way, you would want to be mentally prepared for the long haul.

So it's probably not just a short-term hunkering up of worry that will get you through this thing. It's more commonly a very long-term project. The only positive thing about it all is that we will be here for you, all along the way, regardless of the outcome (which might be a return to total health, another illness diagnosed, or dealing with an eventual diagnosis of scleroderma).

Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Joelf


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Posted 14 December 2012 - 02:02 AM

Hi Lilly,

Welcome to these forums!!

I'm sorry to hear that you've had some worrying test results and symptoms. As Shelley has said, it is possible to have positive blood tests and never go on to develop full blown Scleroderma and vice versa, as many of our members can testify. Unfortunately Scleroderma is notoriously difficult to diagnose and more emphasis should really be taken of your clinical symptoms rather than just the results of the blood tests.

Having developed worrying symptoms and a general feeling of being unwell and poorly in the beginning, I can understand how upsetting and stressful it is to be in a sort of limbo 'no man's land' and actually I found a definate relief in being diagnosed with Scleroderma, as I then at least had a reason that I had been feeling so ill. Perhaps you could go back to your doctor as Shelley has suggested and ask them to explain your test results in more detail. It's a good idea to take a friend or someone with you so that you have a little moral support and also another pair of ears in case you miss any of the finer points of the discussion.

Now that you've joined our community, please do keep posting and let us know how your future appointments and any treatment is going.

Kind regards,

Jo Frowde
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#4 debonair susie

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Posted 14 December 2012 - 09:56 AM

Hi Lily,

As Jo posted, please keep us posted on how you are doing, anything you may find out, via doctors, lab work, tests, etc; we care about all of our folks here and only wish the very best for each.

I can add nothing more to what has been mentioned, by both Shelley and Jo; only that each of us is like snowflakes and our bodies are quite complex in their make-up as you know!

My symptoms began in 1991, with flu-like symptoms, which got the ball rolling for me. However, many diagnostic tests were performed and it was 4 years before my diagnosis of Scleroderma was made; of course, at that time, I had no idea what any of what I had been told by the doctor...WAS! As Shelley said, we all have in common, what you are now experiencing; there is fear in the unknown, but please try to keep yourself out of the "worry zone", as stress isn't good for ANYONE, no matter what the case.

In the meantime, please take care. :emoticons-i-care:
Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)

#5 Sweet


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Posted 18 December 2012 - 09:46 AM

Hi Lily!

I'm sorry to hear about your abnormal tests. I do hope you have a follow up appointment in which you can discuss these with your doctor. If not, please schedule one. Let us know how you are doing.

Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

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