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Kathy D

What stage of skin thickening is the smooth/shiny?

9 posts in this topic

Thanks for sharing. :)

 

Kathy


Diffuse Scleroderma Diagnosed March 2009

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Hi Kathy,

 

It is the last stage of skin involvement in systemic sclerosis (systemic scleroderma) that entails smooth/shiny skin. Actually, I shouldn't say that because for some people the last stage is actually where the skin has been through that phase, and it begins softening and returning to normal.

 

However, there is no way (that I know of, at least) to predict what phases any given individual will experience. Sometimes skin involvement is very rapidly progressive (within a few weeks), sometimes it is a lingering progression (over the course of months or years), and the progression may be interrupted or halted at any point, sometimes due to treatment and sometimes due to just the very natural waxing and waning course of the disease.

 

I'm not a doctor, however. I have no medical training at all. I'm sure I'd flunk a first aid course if I ever took one. Main question is, why do you ask?


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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Hey Shelley!

 

I ask because the skin just below my cuticles on my ring fingers and pinky fingers is smooth and shiny, it has been for some years now. The reason I am questioning it again is because of a phrase in the doctors report from the Sclero Specialist I saw last month.

 

It says:

 

"Raynauds phenomenon, puffy hands, and early dysphagia, in the presence of Scl-70 antibodies rule OUT EARLY scleroderma"

 

So pondering how long I have really had this and was wondering if my fingers were in the beginning, middle or end. I know we cannot predict this disease but I can't stop my self from wondering smile.gif

 

Thank you for sharing what you know!!

 

Kathy


Diffuse Scleroderma Diagnosed March 2009

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Hi Kathy,

 

I'm confused. Has your scleroderma expert diagnosed you with scleroderma, or are they trying to say you don't even have early scleroderma? Or that you definitely have scleroderma but that it is past the early stage?


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 Kathy,

 

Like Shelley I am confused by what your doctor has written. I just wonder if the person typing the report has missed out a comma and it should read "Raynaud's phenomenon, puffy hands, and early dysphagia, in the presence of Scl-70 antibodies, rule OUT EARLY scleroderma" i.e that early scleroderma is a possible diagnosis and the doctor needs to do further investigations to rule it out? From what I understand about the disease Raynaud's, puffy hands and early dysphagia along with positive SCl-70 are all possible signs of early scleroderma, rather than the reverse.

 

Lizzie

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Hello Kathy

 

I'm with Lizzie it's a typo. The sentence makes sense with the comma in it because it then reads that early scleroderma needs to be ruled out as it is a possible diagnosis.

 

The skin issue is a tricky one as Shelley has already said because everyone is very different. For me the skin tightening happened in weeks and was the first symptom and turned out to be a pretty good first sympton because there was no way of making the wrong diagnosis with the amount of involvement I had.

 

I hope you get an answer soon, remember at school being told to mind your p's and q's...someone needs to mind their commas!

 

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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Hey Ladies!

 

Yes, confusing sentence! And yes, I have been officially diagnosed with Systemic Scleroderma, 710.1

 

I will clarify on my next appointment in late September, but the way I interpreted it is that I am past the early stage of scleroderma.

 

I ran this past a friend of mine who has a PhD in nursing, and that is what she thinks too.

 

Can you blame for hoping it means I'm past the early stage? That might indicate slower progression.

 

Thanks for your thoughts!

 

Kathy


Diffuse Scleroderma Diagnosed March 2009

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Hi Kathy,

 

Is this exactly the same doctor who diagnosed you with scleroderma, who wrote that? The reason I ask is because many doctors may sometimes reconsider their own diagnoses, but they are extremely apt to reconsider any other doctor's diagnosis.

 

I have experienced it myself to have what I thought was a rock solid, carefully documented diagnosis completely overturned on a first visit to another doctor or clinic; and then again, even the reverse of that (being re-diagnosed, on what nearly seemed a whim.)

 

So I want to RULE OUT the possibility that you are seeing a doctor who is attempting to RULE OUT the scleroderma that you have already been diagnosed with. Get it?


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 Everyone and Shelley,

 

Thank you for all you thoughts.

 

Shelley, with all you do, where do you find the time to keep track and give individual attention to so many of us? Thank you for thoughts and caring and looking out for us :)

 

Luckily, I am confident my new sclero expert is not trying to overturn my diagnoses. He called me personally to explain my ANA patterns. He said he wished I had the nonspecific patterns again, ran the test twice, but unfortunately both most recent patterns could indicate more severe sclero (I wonder if he was hoping for crest). And of course my scl-70 was positive again too.

 

I see him again in late Sept and will be sure to clarify everything.

 

Hugs to all and have a great weekend.

 

Kathy


Diffuse Scleroderma Diagnosed March 2009

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