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Diagnosing Sd

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#1 vivdustbunny



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Posted 12 January 2008 - 01:46 PM


I am new to this board... just about a week old actually...

I have a question that I would like to ask..

What are the tests necessary to confirm Scleroderma?

I have taken lots and lots of tests and a biopsy...

My Gastro (who is now retired) had spoken to a rheumatologist about the results..

It was then that she told me that I showed "Markers".. for Scleroderma..

It hasn't affected my skin or anything like that... This one has attacked

my Digestive System. I supposidly have had it for 13 years. The first time I got

and attack was 1995 and I lost 85 lbs in about 3 months... I would get

attacks off and on until about 2 years ago, then I got some major attacks and

ended up in the hospital for a while.

I was suffering from sever dehydration and malabsorption ( I think thats how it's spelled).

Two years ago I lost 112 lbs in 2 months...and have had alot of muscle mass loss...

I have lots of sagging skin.. very little muscle..

My tummy looks like the face of a sharpay (puppy) :)

I have no insurance and my husband doesn't get benefits. Because of his income,

I don't qualify for any State or County programs... So basically, I'm on my own

on this one...

I just wanted to know what tests were necessary to confirm this disease,

maybe then I might qualify for Social Security Disability... or something...

I appreciate any info someone might be able to share...

Thank you all...


#2 kellyA


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Posted 13 January 2008 - 11:22 AM

Blood tests and lots of questions, you need to see a specialist in Scleroderma, where are you from?

#3 Elehos


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Posted 13 January 2008 - 12:31 PM

Hi Vivdustbunny,

Love that name! As far as the insurance goes, most states will give an override for Medicaid or other state insurances in medical emergency situations, but you would have to find out. It basically works by keeping track of your medical expenses, and when that takes up a certain percentage of your income, they will consider you as technically within their income guidelines. They will take certain possessions into consideration at times, like cars, and what you might or might not be able to sell, but it doesn't sound like you've got a shiny new Mercedes in your driveway (and neither do we!)

I've never been tested for the malabsorption, but suspect it since my digestive tract has been horrible on and off for years, and there are so many foods I can't eat. Muscle loss comes with the territory, and I hate the way it looks, and the way it affects daily life. Have you been tested for Polymyositis? Find out about the insurance and talk to your rheumatologist to do the tests for the PM and SC since she will know which ones to do. I wish I could offer more help.


#4 Snowbird


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Posted 13 January 2008 - 02:57 PM

Hi Vivdustbunny

I can only help with what my doctors did (not your other questions), sorry I can't offer more help on that either...but I'm sure someone in the group will be able to.

My doctors did bloodwork (but they need more than bloodwork to diagnose this disease). My understanding is that different blood patterns can point to different diseases. My rheumatologist told me that the centromere pattern points to Systemic Scleroderma (Limited/CREST)...and I believe the SCl-70 points to Diffuse Scleroderma. He also did a physical exam, checking my joints, etc. He took a good hard look at the skin on my hands and a good look at my nail beds. He looked down at them with a special light of some kind. Apparently, the capillaries under our nails are different than someone that does not have this disease. I understand that people with Scleroderma have nail beds that are all looped and distorted (I found pictures of this on the web somewhere once).....but you won't be able to see that with the naked eye...the specialists know what they are looking for and can see it with their special equipment. I also have the red spots on my skin (Telangiectasias) which he showed me (I had no idea what they were until he showed them to me, they keep popping up and disappearing, some stay, etc). rheumatologist's are the ones that are in the know about all this bloodwork stuff too...so I agree with Elehos....you should definitely see a rheumatologist. Hope this helps a little.
Sending good wishes your way!

#5 vivdustbunny



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Posted 13 January 2008 - 04:31 PM

Thank you all for your kind responsis..

I am in southern NM.. About the only thing I can do at this

point is wait to see when another attack comes on and I end up in

the hospital.. I can try and get those tests done at that time...

Just take one day at at time...

Bless you all...

Thanks again..


#6 peanut


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Posted 13 January 2008 - 04:48 PM

Viv, You should see about connecting with Janey. She's also from New Mexico.

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#7 vivdustbunny



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Posted 14 January 2008 - 04:24 AM

Thank you for your much appreciated info.

Hope youn are doing well...

Janey is also from NM?... I believe I will contact her..

I agree about the chocolate for the soul....

helmets save lives... :)

Bless You