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What is the Neck Sign?


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#1 ladybug

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Posted 30 May 2009 - 02:09 PM

Hi Everyone,

I came on this site a few weeks ago because I had a positive ANA and SCL-70, but no symptoms of scleroderma. I saw on a site that there is a Neck Sign and it mentioned ridging and beading. Can anyone explain this? I had this test a year ago and still worry about it, but don't know what skin signs look like, other than tight skin on the hands. What does it look like on the body? I have some wrinkles or ridging on my chest and across collarbone, but no discoloration and it appears to be soft skin and the ridging is very fine. Any info anyone can give me would be appreciated.

Thanks,
Ladybug

#2 Amanda Thorpe

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Posted 31 May 2009 - 12:42 AM

Hello Ladybug

It seems from your post that you're handling your situation very well and avoiding the temptation to be hysterical. Worry is natural when we don't know what's around the next corner.

I must admit I don't know a lot about what the neck looks like in scleroderma and although we have a photo slide show I didn't see any pictures of the neck.

Now I was going to include here a link to the slide show but decided to let you find it yourself if you want because some of the photos are of the extreme of scleroderma and seeing them might not do you any favours particularly as you currently have no symptoms. If you do decide to take a look bear this in mind, I'm into year 2 of diffuse systemic sclerosis and I don't have calcinosis, major colour changes with Raynaud's, hair loss or any surgeries so the photos may never apply to you either.

Hopefully someone will chime in with more information than I have been able to provide. In the meantime continue as you are, cautious but not hysterical about what the future may bring, or indeed may not!

Take care.
Amanda Thorpe
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#3 MaryFanPhilly

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Posted 01 June 2009 - 12:24 PM

Hello Ladybug,
I wouldn't be concerned if I were you. I've had diffuse sclero for several years, and it was not until recently that my head and neck were involved. It started in my hands, moved up my arms to my shoulders, my feet to my knees, then to my trunk, finally to the head and neck. I too was concerned about my appearance.
It isn't noticeable visibly in my neck but you can feel the tightness and ridges. It might not show up in pictures even on close up. My face is very tight, but the good news is I look waaaaaaay younger than I am. My son is 25 and people always think he's my boyfriend, much to his consternation!
It sounds like if there is any progression in your skin it is very slow. It might never happen at all. Remember than not any two of us have the same onset, symptoms or progression. That is one of the mysteries of sclero, and why it is so hard to treat. My first skin symptoms were swelling, and tightening, then the skin in the affected area would look 'salt and pepper' and people were always asking me if I'd been on a cruise since I look tan all the time.
My family doctor told me "you have a rash" and the reflux and heartburn were because I was over 40 and overweight. The fatigue and joint pain I was experiencing were all in my head, and I needed more exercise. After six months of this, I did some research of my own and read her the symptoms of scleroderma for the first time, she told me I read too much: "nobody gets that disease" she said. She's no longer my doctor, by the way.
Unless I tell someone or show them I have sclero, they wouldn't know it. And now things are loosening up and my skin is softening, something that happens to many of us.
You see, it isn't all bad news, and sadly as Amanda pointed out, we get the worst case scenarios which terrify us. We are all living proof on this board that you CAN live with sclero. Huzzah for us!
The best advice I can give you is that if your hands are getting stiff, try to get your doctor to send you to a hand specialist and therapist for exercises. I do feel that my hands would be much tighter if I didn't do the exercises she gave me.
Good luck, and keep us in the loop.
Mary in Philly
Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#4 ladybug

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Posted 02 June 2009 - 06:18 AM

Thanks for your responses. I have been told by a rheumatologist who does specialize in Scleroderma that I do not have it and probably never will, but because I had a positive Scl-70 blood test, I do worry and I watch for any signs. You are all such a wonderful group and I am glad that I read your posts, because I know that scleroderma can be managed and many of you have had it for many years.

Bless you.

#5 Jeannie McClelland

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Posted 05 June 2009 - 10:57 AM

Hi Ladybug,

We have an image of the scleroderma neck sign in one of our patient stories. It's at the bottom of Leslie R's page (and thanks to Leslie for submitting it!).

Although having a positive ANA and Scl-70 isn't something you'd volunteer for, it's my understanding and experience that most diagnoses of scleroderma (in any form) have been based on clinical symptoms as well. Here's hoping you never develop any symptoms. :) You are still welcome to the Forum even without them!

Best wishes,
Jeannie McClelland
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