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How Should My Symptoms Be Categorized?


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#1 Liven

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Posted 17 May 2009 - 10:17 PM

I am Lee, female aged 38 years had Raynaud's for many years and finally a doctor who was alert diagnosed me as a scleroderma patient at end 2005. My last blood and urine test last month showed normal result. However my face and hands are tight and each time I am exposed to sun, my face and arms will be tanned! I have started to have Calcinosis (Calcium Deposits) on my fingertip.

I live in Kuala Lumpur, Malaysia (a tropical weather). Will like to hook up and seek support and expert opinions.

Not sure which classification I fall under - CREST or the others?

#2 Shelley Ensz

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Posted 18 May 2009 - 12:48 AM

Dear Lee,

Welcome to Sclero Forums, I am glad you have joined us! You'd need to check with a scleroderma expert to be certain of your scleroderma classification. But you might be able to narrow it down to a few possible categories by studying our section on Types of Scleroderma.
Warm Hugs,

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

#3 Liven

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Posted 18 May 2009 - 01:11 AM

Thanks for the prompt reply Shelley

I would believe I am under CREST. Have C, R, S...

Not sure if I should be categorised as diffuse? what strong symptoms to be under this category.. 5 years, there was a scarring in 1 of the lung but no further complication till today, so I am confused and not sure how to categorise? the specialist doctor did not categorise me.

#4 Jeannie McClelland

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Posted 18 May 2009 - 04:43 AM

Hi Lee,

I want to welcome you to the Forum too. We're a friendly bunch and prone to hugging.

Here's the page on Diffuse Scleroderma. As you will see, there's plenty of different criteria to be met and even the doctors will disagree from time to time about how to define a particular patient's form and stage of the disease.

A really important thing to remember is that no matter what form of scleroderma you have, your prognosis is not set in stone. The course of the disease varies immensely from person to person. If you took my 'labels' and looked at the statistics, I ought to be a pretty sick individual. However, I'm as healthy as a horse and the only sick thing about me is my sense of humor! :lol:

I hope you'll post often and let us get to know you.

Big hugs,
Jeannie McClelland
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#5 Liven

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Posted 18 May 2009 - 04:47 PM

Thanks Jeannie

We live our lives as normal as possible since the diagnosed in 2005 but suddenly slight panic attack after some readings in the Internet.

There are statistics that look grim. Eg what do they mean "Survival rate 80% at 10 years since diagnose" Do they mean our lifespan is only up to 10 years after diagnose?

My result on extractable Nuclear Antigen showed SS-A(Ro) positive, SS-B (Ca) positive. In the report both are termed as Sjogen's Syndrome! (very foreign term to us!)
Also showed SCl-70 positive... I supposed that make me a diffuse patient!

Moving on, I want to know if proper diet, exercises & lifestyle help?

#6 Jeannie McClelland

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Posted 18 May 2009 - 05:33 PM

Hi Lee,

I think all of us probably panicked when we got our diagnoses and started reading up on scleroderma on the internet. It's only natural to want to know more and while I think it is very important to be an informed patient and aware that the potential exists for serious complications, it is just as important to remember that each one of us will have a unique experience with scleroderma.

I have 'systemic sclerosis sine scleroderma' and nearly drove myself crazy trying to figure out whether that was limited or diffuse. I asked my rheumatologist when he gave me my diagnosis what my prognosis was and he said "You'll do as well as you do." At the time that made no sense to me, but it does now. I'm doing very well indeed, despite having pulmonary fibrosis and pulmonary hypertension. I expect to continue so.

'Survival rate 80% at 10 years since diagnosis' means that 80% of [whatever class of patients were studied to get the statistic] lived at least 10 years beyond the date of diagnosis. Ten years is likely to be the length of time the patients enrolled in the study were followed. Who knows how many of those patients have continued to survive but aren't being tracked by a study?

Proper diet, exercises & lifestyle do help, especially by improving one's overall health. The healthier one is in general, the better. Attitude helps too. Worrying about the unknowable just causes stress and stress is really not good for anybody. We have a great section on Anxiety and Attitude with some good tips that you might find helpful.

Given our time zone differences, you'll hopefully be having a nice relaxing lunch in a tropical garden filled with beautiful flowers while I'm heading to bed here way up in the mountains. I hope you have a great day!
Jeannie McClelland
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International Scleroderma Network