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Biomarker for Diffuse Scleroderma skin has been discovered!


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I knew it! Diffuse...


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#1 amberjolie

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Posted 18 April 2013 - 04:03 PM

Today I saw my rheumatologist and the med student who saw me first said something like, "So you have diffuse systemic sclerosis?"  And I said that as far as I knew, I had been diagnosed with limited.  He said that the extent of skin involvement would make him think it was diffuse, and that we could ask the rheumatologist when she got in.

 

So essentially I found out from her that yes, she changed her diagnosis based on my skin involvement.  I never knew that until today!  I always wondered why she would think I had limited when the skin was tight on my chest and stomach.

 

So basically the only thing different she suggested is to take my blood pressure twice a week and record it, so I can notice any changes.

 

The fun continues! :rolleyes:



#2 Shelley Ensz

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Posted 18 April 2013 - 07:50 PM

Hi Amberjolie

 

I am sorry you officially have diffuse scleroderma, but I am glad you finally have a more accurate diagnosis, which is often the sort of thing we throw a Sclero Happy Dance over. Its not over having scleroderma, but rather over the feeling that we finally have an accurate, true, appropriate diagnosis as it tends to irk most of us when our research points to a different conclusion than what our doctor(s) might be telling us. 

 

In fact, I think that is what Margaret is wrangling with, in another thread.  She simply wants to know the truth, the most accurate diagnosis, and when they change the way they list a diagnosis it can make us question everything, including our own sanity, sometimes.

 

So I'm glad your doctor is finally on the same page you are and that it makes sense to you all the way around.  At the same time, I'm also sorry you have diffuse scleroderma.

 

:emoticons-group-hug:


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Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Joelf

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Posted 19 April 2013 - 06:13 AM

Hi Amberjolie,

 

Although it's not great that you have Diffuse Scleroderma, as opposed to Limited, as Shelley has said, it is good to at least get a diagnosis.

 

I've always found the uncertainty of the disease worse than the actual knowledge; once the worst scenario is confirmed, I can usually try and deal with it!!

 

I'm sorry that you do have Diffuse Scleroderma, even so!

 

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#4 Sweet

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Posted 02 May 2013 - 07:06 AM

Hi Amberjolie

I am sorry you officially have diffuse scleroderma, but I am glad you finally have a more accurate diagnosis. I ask for a copy of all of my chart notes to be mailed to me about a week after the appointment. I find out all kinds of things they say, and change that they never tell me! Perhaps they think the average person doesn't care about the details, but some of these details are pretty important!!
Warm and gentle hugs,

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#5 Amanda Thorpe

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Posted 02 May 2013 - 02:22 PM

Hello Amberjolie

 

Limited has a slower onset, progression and better outcome than diffuse, of the two I'd have limited! I do however understand wanting an accurate diagnosis and being glad of one.

 

Take care.


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#6 Shelley Ensz

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Posted 08 May 2013 - 06:22 PM

Hi Amberjolie,

 

How do you feel now that you've had a bit of a chance for the upgraded diagnosis to set in? 

 

Was it simply no shock at all, just a confirmation of what you really suspected all along?

 

:emoticons-group-hug:


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.

#7 amberjolie

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Posted 11 May 2013 - 08:04 AM

Hi!

 

You're right, it wasn't a shock, because yes, I had suspected it all along.  And obviously my particular case isn't the exceptionally bad type of diffuse, because I would've progressed more quickly and severely if it had been.  So at least that's positive.

 

So far I've avoided any of the particularly dangerous manifestations like lung or kidney or heart involvement, so hopefully this keeps up!

 

Thanks!



#8 Shelley Ensz

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Posted 13 May 2013 - 01:41 PM

Hi Amberjolie,

 

There are some of us around here who have still managed to tread on the "lucky" side of diffuse scleroderma. The big trick seems to be making it past the first three to five years without severe major organ involvement.  Some of us were on plaquenil or other disease-modifying drugs, apparently just in the nick of time, or perhaps we just happened to lapse into remission.

 

But I've always been happy just to have things properly diagnosed. They can only threaten us with terminal illness so many times before it loses its luster or even its sense of imminent threat. After we become innoculized to that, I think the correct diagnosis is more a matter of it feeling right -- sort of like when you finally try on the perfect outfit for a special occasion, and it just plain fits.  It feels right.  And it gives both us and our doctors solid ground on which to make testing and treatment decisions in the future.

 

I have to confess to being a bit of a renegade, once the diagnosis issues were largely settled. I felt that the playing field tilted then, and I became much more questioning whenever more tests were suggested and much more hesitant to try any new treatment just because it "might" work.  I also started focusing a lot more energy on enjoying life today and figuring out inexpensive ways of adding frequent doses of joy, such as eating on the patio instead of indoors -- same effort but more joy.

 

There is something about having the right diagnosis that frees up the goal-setting part of our mind to enjoy more of life, since a portion of our mind is always set on the diagnosis issue, no matter how well we deal with it or fight against it, when we know our current diagnosis isn't the perfect fit. So I hope this allows more joy to flow into your life, so you can make the very best of life today and let tomorrow take care of itself, somehow.

 

:emoticons-group-hug:


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.