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Hessek4

Conflicting opinions

4 posts in this topic

Hi all,

 

I went to see a new Rheumatologist today and still do not have a definitive answer.

 

Here is what I know. I have a positive ANA with a 1:2560 titer with centromere pattern, reflux disease, Raynaud's disease, mitral valve prolapse, low vit D and low blood pressure, dry eyes, some questionable red spots on my face mostly on or around my lips and some scattered brown spots on my face. I live in the midwest.

 

All my symptoms have developed over the last 5 years or so except the Raynaud's which has been a bit longer. Two Doctors, two opinions. One says limited scleroderma, the other says no, just Raynaud's. Both have told me that scleroderma is much more common that most people think and in my case there is no treatment needed except for the reflux which I take pantoprazole.

 

I don't want to be diagnosed with some thing I don't have, but don't want to be mis-diagnosed either and at this point don't know what to do or who to believe. Everything I've read about scleroderma has me more concerned than either of the doctors seem to be. Is it possible to have  a positive ANA 1:2560 centromere pattern and not have scleroderma and it just be Raynaud's?  Am I over reacting and should I just not worry?

 

Thanks,

Kathy

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Hi Kathy,

 

Welcome to Sclero Forums. I'm sorry that you are sick, and dealing with conflicting opinions.

 

If I were you, I'd seek a tie-breaker opinion from a listed scleroderma expert.  Since your illness is not moving fast or aggressively, and you don't yet have prominent symptoms of any particular connective tissue disease (such as a lupus butterfly rash, or tight skin from scleroderma, etc.), you might still have a long wait for a definite diagnosis. And, it might be beside the point if your symptoms remain mild, as about 50% of people with some symptoms of connective tissue disease never go on to develop a full-fledged, more specific, illness. Therefore, it's normal for many doctors to sit on the fence for awhile, waiting to see what else develops, if anything.

 

It can be extraordinarily stressful to have reason to suspect serious illnesses, and more stressful to have loose or disputable answers. Most of us find support during this phase to be absolutely vital.  So I want to assure you that you, and everyone else in your position, are very welcome and encouraged to participate fully in Sclero Forums.  We know you know that doesn't equate to a diagnosis. But we know you know that you need and deserve support just as much, if not more, than someone who already has an iron-clad diagnosis.

 

:hug-group:


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,

 

Welcome to these forums!

 

I'm sorry to hear that you have worrying symptoms, which could possibly relate to scleroderma and I do understand that the fear of the unknown is one of the worst fears of all.

 

As Shelley has said, it is important to consult a listed scleroderma specialist, as this complex disease has many little foibles and idiosyncrasies, which make it such a difficult disease to diagnose for the average rheumatologist.  Also the presence of positive antibodies does not necessarily mean that you will suffer the full blown disease and the disease itself can wax and wane and also stablise. Sometimes it's possible to have symptoms of several connective tissue diseases, which can make a diagnosis even more complex.

 

However, now that you've found our forums and joined our community, you will be able to receive support from our members and please do take a look at our medical pages, which are full of up to date and non-scary informatiion about scleroderma.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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I was talking to my dad last week and he said he spoke with his doctor; they figured that I had scleroderma since I was a teen-ager as I was never able to do things other kids could do, like sit with my legs crossed.

 

That was when I was young, now I am 60 and just found out I have scleroderma so for some of us it can take longer than others to get a full diagnosis. Relax and do not stress your self out; one of my secrets to keep from stressing is quilting and making doll clothing.

 

Bless you and I will be thinking about you.

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