greypilgrim256

Has anyone had a late or slow onset of diffuse skin involvement?

26 posts in this topic

Thanks for the input everyone. Lizzie, do you happen to know what antibody type you have with the nucleolar pattern?  Have you ever had "tendon friction rubs" at any of your joints?  

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Quiltfairy, if everyone here with scleroderma who has been called a hypochondriac by their friends or family raised their hand and we took a screen shot of it, there probably wouldn't be a computer screen anywhere wide enough to display the whole picture.

 

Although hypochondria is actually quite rare, inaccurate armchair diagnosis by unqualified people is probably at epidemic proportions, and it is typically helped along by the truly drastic delay in accurate diagnosis for scleroderma.

 

But, it is what it is. You can't fight a "diagnosis" of hypochondria by explaining more about your symptoms, because that just affirms the diagnosis in their mind. What I  do is try to silently forgive them for being terminally stupid, and in the case of relatives, I really hope that the terminal stupidity is not genetic.

 

And if anyone has found a more effective way to deal with this all-too-common situation, we'd surely all love to hear about it.

 

:emoticons-group-hug:


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.

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Hi,

 

I explained once to a moderately sympathetic relly, wife of a cousin, how I feel.   

 

They live the life of Riley, at sea most of the time or rather holed up in some fabulous cove somewhere where it is hot, but not too hot, living on board their ocean going yacht!!  In spite of the thought of that luxury they have to be really fit and able and ready for any eventuality.  

 

So I said to her, do you ever get so exhausted that you feel you can't go on, can't take another step before you have rested?   Of course she has.   Well that's how I feel 90% of the time.

 

Nuff sed

Judyt

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I simply told my brother I would change places with him any day.   I would love to be putting in my 40 hours a week and he could sit home on disability trying his best to cope with a disease like I have.

 

 

He did not seem to want to do that.

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Hi greypilgrim, in response to your question- although I have nucleolar pattern ANA the tests have not detected any specific antigen. However the standard testing in my hospital only tests for some but not all antigens.

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Quiltfairy, your brother is also welcome to swap with me, today I got up at 7:30 but not a.m. actually p.m. and no, I was not just resting my eyes...I wish!

 

We tend to think a disease only serious if we can either see how it debilitates or we have been give a short time limit to live by. Well a life limiting (terminal) disease is not just cancer or something that kills us off within months or two years at most. When I saw the scleroderma expert for the first time I asked what my life expectancy was, I had no internal organ involvement but rapid, massive skin involvement, he gave me at least 10 years. I was 39 years old and should have expected to have at least 30 years at that point not just 10. I call that a life limiting illness. I call that a serious, life changing illness. I call that an illness your brother would not want in a hurry. 

 

Funny, you think people would be glad to see us not as ill as we could be, better than expected, still able to have quality of life. I may well buck the trend and exceed 10 years but I don't think whatever it is will be what it would have been pre scleroderma. No one in their right mind would want that.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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How many years ago was that Amanda if you don't mind me asking? 

 

Do you happen to know what antibody type you have? 

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Lizzie, there is a good chance it is the U3RNP antibody with the nuceloar pattern. It is not a commercially available antibody to test for and has to be sent to special labs. That is what I have. Only 3 antibodies produce a pure nucleolar pattern.

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Sorry to reply late, Greypilgrim. I was diagnosed in 2007 and my ANA/SCL-70 was at diagnosis, is now and always has been negative. I am what they call atypical. My blood work shows me as being totally healthy, nothing wrong not even an abnormal rheumatoid factor!  As helpful as it would be for blood work to be 100% reliable, it often is a red herring.

 

Hope this helps and take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hello Grey,

 

I am talking now about your question of Limited Sclero morphing into Diffuse.   Prior to this I had never heard of this happening, but in the last 24 hours I have had a conversation on another Forum with a lady in the UK who had just that happen.

 

She says she was diagnosed with Limited and then suddenly it began to change very quickly into Diffuse.   She was crediting quick action from Prof.Denton at the Royal Free in London as saving her life.   So it would seem it can happen, but only rarely from what all of us here seem to know.

 

Sorry if that was NOT what you wanted to hear.

 

Judyt

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