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millerscrossing

Do I Even Have Sclero?

5 posts in this topic

Can someone please put this question to rest - can one have diffuse sclero - attacking the lungs - and yet have no involvement at all with any other part of the body - internally or externally first...........

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Hmm, not totally sure about your question, but I have diffuse systemic sine sclerosis, which is scleroderma without skin involvement. I have it in my lungs. I think most people have Raynauds and heartburn. Do you not have those symptoms?

 

I am sorry if you've posted this before, but what is your diagnosis or do you have one?

 

 

Take care.

Jennifer

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Hi there,

Well your question is a good one...and very legitimate. I would say that this would be the doctors call. Everyone progresses differently, so your case could be far different than anyone else. There are markers that the doctors go by to make a diagnosis for this not-so-common autoimmune disease.

 

Do you have a doctor that knows a lot about scleroderma?


*WestCoast*

 

********

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Scleroderma comes in different forms and affects each person differently. Just because one person has a symptom, doesn't mean you will. About 95% of SSc patients have Raynaud's which seems to be the more common symptom, however, skin involvement and organ involvement are all over the place. As Jen mentioned, she has sine scleroderma which is no skin involvement. I started with skin involvement on my hands, but it's gone now and no further skin involvement. I do have heart lung problems however, but an alright GI system and great kidneys.

I would guess that the answer to your question could be yes; however, not being a doctor or scleroderma specialist, I wouldn't make a bet on it. I don't even think they would make a bet on it. This is a very weird disease. My rheumatologist is baffled by my lack of skin involvement since I do have the other symptoms. It's a guessing game.

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi there ,

 

My son has no skin invovlment or Raynaud's either. He does have esophageal dismotility, lost his voice for a while, major fatigue, and mild restrictive lung disease.....along with positive blood work.....ANA positive (speckled pattern, diffuse cytoplasm), high sed rate, high fibrinogen, and 3 positive Anti-RNA Polymersae 1/111 tests. He was diagnosed last November.

 

One doctor says sine sclero and another just says UCTD. He's been on Plaquenil for 3 months now and we are seeing reversal of some symptoms.

 

Take care, Everyone.

Margaret

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