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fieldoflife

Initial diagnosis of Scleroderma?

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Hi. I am brand new to the forum and have a few questions. Some background info: A year ago I went to a rheumatologist to find out if I have Sjogren's Syndrome, because I had many of the symptoms. Several antibody tests were done, and while the antibodies for Sjogren's were negative, the rheumatologist agreed it was most likely Sjogren's based on symptoms alone.

 

However, one of the antibodies *was* positive--Scleroderma IgG--at 1.7 on a scale of 1.0 or less. At the time of the appointment last year, this was not followed up on, and I had forgotten entirely about it until I came across it recently when reviewing some lab results. Today I did some poking around the web, but haven't yet found out if this antibody is specific only to scleroderma or if it can turn up positive in other conditions as well.

 

Reviewing some of the symptoms of scleroderma, I don't seem to have many of the classic markers--no skin tightening or other skin symptoms. The symptoms I do have are pretty non-specific--digestive problems (constipation, diarrhea), intermittent lung problems--and could have many causes. I do have symptoms of Raynaud's, but of course this could be secondary to the Sjogren's.

 

So my 2 main questions are:

 

1) Is it possible to have scleroderma without any apparent skin symptoms (tightening, etc.)?

 

2) What, if anything, besides scleroderma could cause a positive IgG antibody?

 

Any input is greatly appreciated.

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Hi and welcome to the Forum. I hope we can give you some good reliable information in answer to your questions.

 

I can answer one of them through personal experience. Scleroderma without skin involvement is called systemic sclerosis sine scleroderma and it's usually lumped in with the diffuse form (because of internal organ involvement) despite having little or no skin involvement (I have telangiectasias).

 

As far as a positive Scl-70 being specific to scleroderma, it's my understanding that it is more of a pointer towards the scleroderma spectrum of diseases. Diagnosis isn't made on the results of blood tests alone, there is a list of major and minor criteria that have to be satisfied (think choosing from a menu: 2 of column A or 3 from column B. In my case I had a positive ANA in the speckled and nucleolar patterns but haven't ever tested positive for Scl-70~

 

Getting a diagnosis is probably the single most frustrating thing we go through. There is an awful lot of "watchful waiting" if we are lucky and if we aren't, hmmm, well I think being made to feel like you are a hypochondriac should be one of the minor criteria! :lol: Is your doctor going to investigate further? I hope you'll let us know how you get on.

 

Best wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Yes, many sclero patients have little skin involvement, especially with the slow-onset or "CREST" form. This was the case with my father and with me.

 

Antibody tests can be confusing - suggestive but not thoroughly diagnostic. For instance, I am negative for scl-70, which is associated with lung complications, yet I have lung complications (?)

 

If your symptoms are debilitating, you might want to see a sclero expert. The rareness of the disease, coupled with the uniqueness of each case makes it difficult for a doctor who isn't a specialist.

 

Good luck,

 

Craig

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Hello Fieldoflife

 

Welcome to the forum! As already said antibodies can be a bit of a red herring, certainly is for me with a negative ANA in fact my blood work suggests I'm perfectly healthy but with heart involvement from scleroderma I can confirm I am not!

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

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(Retired) ISN Sclero Forums Assistant Manager

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International Scleroderma Network (ISN)

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Hi Fieldoflife

 

Welcome to the forum. :bye:

 

I tested positive with the IgG antibody but I understood that it relates to 'Hughes' or 'sicky blood' syndrome & relates to the way the blood clots excessively; I didn't realise it was relevant to Scleroderma. However I have no medical training, so what do I know?!! ;) :lol::lol:

 

Due to my idiotic vanity, I had foam injected into a very large varicose vein which caused a DVT to form in my groin about 5 years ago. It's a long & tedious story with which I won't bore you, but suffice to say instead of having legs like Betty Grable, which was what I intended, because of my 'sticky blood' I ended up with the DVT!! :rolleyes: At the time I couldn't understand it & was very miffed with the doctor who did the procedure; now with hindsight I realise that it was inevitable, given my blood test results. It was only when I was tested for Sclero & had virtually every blood test known to man that it came to light. :unsure:

 

I was also told that the IgG antibody can be the cause of miscarriages; however having never been pregnant ( I don't do babies! ;) ) I can't really advise on that!! :)


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

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International Scleroderma Network (ISN)

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Thanks for the responses.

 

In terms of following up with a doctor, I probably will eventually, but right now it's taking a back seat to other health issues (recently diagnosed with sleep apnea, so working on getting that treated) and thyroid, which has been intermittently high. Since the most debilitating symptoms may not even be related to scleroderma, and because from what I understand, treatment for scleroderma wouldn't necessarily improve the symptoms, I'm planning on treating these other issues first. From what I've read, though, I guess it's an important thing to diagnose, since it can be life threatening.

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Hello, and welcome!

 

I'm sorry to hear about your various health issues. It can take time to work through everything, but I would advise you not leave the scleroderma symptoms hanging out there for too long. As with any disease early detection and treatment are the best.

 

Again, welcome! :flowers:


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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