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Update on diagnosis.


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#1 sara89

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Posted 11 December 2014 - 04:36 PM

Hello everyone,

So I saw the rheumatologist today about my positive sclero Ana. From what the doc says, I don't have scleroderma and he is pretty positive of it. He said my positive Ana does not mean I actually have scleroderma. He said I might have a 5% chance of ever developing it.

 

While this is a major relief, I am just worried he didn't perform all the tests necessary to diagnose. All he did was bend my joints and see my flexibility and also take a look at my skin and hear my breath through a stethescope. He did not do the nailfold or other tests I've heard of.

 

I will definitely be getting a 2nd opinion but am still a bit worried.  My main symptoms are all digestive related that have been going on for about a year.

 

Does anyone have any thoughts if I should still be worried? Thank you again and take care.



#2 judyt

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Posted 11 December 2014 - 05:02 PM

Hi Sara,

 

In my opinion, and remember I have no qualifications, I would suggest that unless you can see a Scleroderma Expert you can't be sure that is going on with your digestive symptoms. 

 

Anybody who had seen me at your age would have said that I just had Raynaud's because I had no skin involvement.   An Expert told me years later that the skin on my fingertips was typical for Sclero. but nobody before then had noticed.   My flexibility, fitness and breathing in those days were absolutely average and even when I insisted on showing people my cuticles, which were far from average nobody was alerted.   The only advice I ever got was to use cuticle cream!!

 

I suspect you will not be satisfied until you have investigated further, so do what you can to find somebody good.

 

Judyt



#3 Joelf

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Posted 11 December 2014 - 09:44 PM

Hi Sara,

Well now, in one respect your rheumatologist is correct, in as much as a positive blood test does not necessarily mean that you will go on to develop full blown Scleroderma; having said that, you are still experiencing symptoms of gastric problems.

Like Judy, I also would suggest that for your second opinion you try and consult a Scleroderma specialist; with the best will in the world, your current rheumatologist may only have ever seen one or two cases of Scleroderma, so perhaps is not really in the best position to help and advise you, especially as you do have other symptoms, apart from positive blood tests.

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#4 Amanda Thorpe

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Posted 12 December 2014 - 02:43 PM

Hello Sara

 

Well, if nothing else, a second opinion will put your mind at rest. As we know a positive ANA does not mean scleroderma and there are many things that can cause gastric issues, I am not sure what yours are but not everyone with reflux has scleroderma. I am guessing a nailfold capilleroscopy was not carried out because no other symptoms suggested scleroderma.

 

Mind you, I can but guess, as suggested make your second opinion that of a scleroderma expert, then you'll know for sure.

 

Take care.


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#5 sara89

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Posted 12 December 2014 - 09:32 PM

Thanks for your replies and support. I feel 50% better with the news but will definitely be getting that 2nd opinion!

#6 Kathy D

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Posted 13 December 2014 - 01:05 PM

Sara,

 

I have the best Rheumatologist in my area, and also consulted with a "Scleroderma Expert" the first few years, and neither of the them looked at my nail capillaries.  I have to wonder if that is practiced more in Europe?  Hope that helps.


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#7 sara89

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Posted 15 December 2014 - 02:13 PM

Thank you Kathy. I'm just not sure I'm out of the woods from him just looking at my skin and joints. I have a positive scl 70

#8 miocean

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Posted 18 December 2014 - 05:07 AM

When I was searching for a diagnosis I had two doctors who thought I had scleroderma but my general practitioner kept on saying I didn't. No one suggested running an ANA panel. It was during a visit to a neurologist to rule out multiple sclerosis that I asked her to run it and when it came back positive was referred to a rheumatologist who gave me the diagnosis based on the ANA and my symptoms. I was then able to see a scleroderma specialist. 

 

I am hoping you don't have scleroderma but doctors can be wrong and scleroderma is hard to diagnose. Keep on looking for answers and let us know.

 

miocean


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