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Positive SCL 70 fear!


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#1 Danieck

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Posted 18 November 2015 - 01:54 PM

Hello!

So a general background.

About two to three years ago I was doing military training in the Spring; it was raining, cold, icy and I wasn't properly dressed. I remember how uncomfortable I was and itchy and hot my skin became when coming in from the cold.

 

Later that night I began to develop nodules on the middle knuckle of my dominant ring and middle finger. They became hard to bend due to pain and swelling and they didn't going away for about a month and the pain lasted one or two weeks.

 

The nodules continued, same pattern over several years, switching hands, and happearing after working in cold weather environments and disappearing after about a month. Recently I bit the bullet and went to the doctor. Many of the symptoms I described made him think Raynaud's with an autoimmune issue, the pain in my nodules (only painful when they are there) was getting more severe and he was concerned with their size and how well formed they are.

 

He ordered several blood tests. The only positive is SCL-70 with a 198 measurement. I am very active. I regularly jog, and quit smoking several years ago, I'm a 28 year old female with a nine-year reserve military career and a great trade job. I have a beautiful daughter and a great husband and I am terrified.

 

What is my next step?  I go to the rheumatologist in a few weeks and my stress levels are out of this world.



#2 Shelley Ensz

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Posted 18 November 2015 - 03:25 PM

Hi Danieck,

 

Welcome to Sclero Forums.  I'm sorry you have concerns about possible scleroderma, and send my best wishes to you, and your family.

 

As for your next step, my guess is that you've probably already figured that out.  It's to do everything in your power to reduce your stress levels because stress will make all your symptoms worse, trash your sleep and make it difficult to find and appreciate the thousand daily joys of living with your husband and daughter.

 

Cope with the stress in every positive way you can think of.  I don't know if that means declaring a movie marathon, leaning very heavily on any faith you have, reading everything there is about scleroderma or even tuning it out entirely.  The basic problems we face when the issue of serious illness first arises in our life, is fear of the unknown and fear of death. On some level you have faced those same issues your entire life and you have always bounced back.  It's likely just more severe and in your face right now.  Try to think of those times when you've been frightened and recall how you overcame it.

 

Basically, very few things in life are ever as bad as the horrors our imagination can conjure.  Odds are that even if you have scleroderma, it is likely very mild and taking a very gentle course. What you've coped with the past two or three years is very likely what you'll be coping with the next two or three years as well, and long into the future.

 

You seem to be living fairly well with your existing symptoms. Scleroderma is well known for waxing and waning, even without any treatment at all.  It is totally fantastic that you already gave up smoking, that is an ace in your corner!  Take the time right now to pat yourself on the back for that, because if you hadn't already done that, it would be what we'd all be hollering about as the best way to improve your health going forward.

 

But you already have great health habits and a delightful family and a great doctor.  Your next step after this will probably be to see a listed scleroderma expert, as the odds of your local rheumatologist knowing anything at all about scleroderma are very slim.

 

Take a deep breath. Count to ten. You and your family are all going to be much more okay than you think you are at the moment. And we will be here for you.

 

:hug-group:


Warm Hugs,

Shelley Ensz
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#3 Joelf

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Posted 19 November 2015 - 10:42 AM

Hi Danieck,

 

Welcome to these forums!

 

I'm sorry to hear that you're having worries and concerns about having scleroderma. Although you have had a positive blood test for the disease, the very nature of it means that you may never develop any further symptoms, as it is perfectly possible to have positive blood tests and never go on to develop the full blown disease and vice versa. It is a most complex disease and one of it's little idiosyncrasies is that it does affect everyone differently.

 

One thing is common to autoimmune diseases, however; as Shelley has advised, stress can make the symptoms of them very much worse. Easy to say, I know (been there, done that! :wink:) Being as fit as you are will, I'm sure, help you should you be diagnosed with scleroderma, as it makes it much quicker and easier for you to monitor any further symptoms (when I was diagnosed with scleroderma, like you, I was very fit and so knew very quickly that there was something radically wrong with me. I was therefore able to be treated successfully, as the fibrosis on my lungs was thankfully still at the inflammation stage.) 

 

I'm afraid that, of course, I can't predict the course of the disease in your case, but it may never become any worse. If it does, then it's still not the end of the world and you will find ways to cope with it, as I did.

 

Kind regards,


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