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Have Scleroderma

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#1 vivdustbunny



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Posted 10 January 2008 - 11:15 AM


I am new here... My name is vivdustbunny and I found out 2 years ago that
I had scleroderma (systemic.. I think diffuse)...

This thing attacked my digestive system and I lost 112 lbs in just under two months ... I had another attack back in 1995 and lost 85 lbs in 3 months.

Actually I have had this for 13 years but wasn't until 2 years ago that I got
a really bad attack and ended up pretty sick in the hospital..

The last attack was on Thanksgiving... vomiting.. stomach spasms..

Thank goodness I had some medication from when I was in the hospital so that
kept me out of there this last go round...

I'm still learning about this disease...

Just have to learn to LIVE with it...

Knowing there are others out there is a great comfort in itself...

Bless you all...


#2 janey


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Posted 10 January 2008 - 06:12 PM

Welcome Darlin'! I'm sorry that you are having so many problems with your GI symptoms. 112 pounds in 2 months is dangerous! What on earth did your doctors do about it? What are they doing for you now? Are you seeing a scleroderma specialist? If not, have you asked your rheumatologist how many people with scleroderma he has treated? Please make sure your doctors are experienced with scleroderma. It is no longer a guessing game. There are great diagnostic tools and medications to help us out. I hope you get some expert help.

Again Welcome! We're very happy that you have found us. It's a great group with lots of experience and the willingness to share and support each other.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#3 vivdustbunny



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Posted 11 January 2008 - 06:36 AM

Thank you Janey

I just found this forum lately and I am not quite sure yet on how it
works... just have to familiarize myself with it....

I currently don't have a doctor for SD.. my Gastro that I was going to retired.

I had undergone a whole bunch of tests... including a biopsy... After having
consulted with a rheumatologist she told me that I had the "markers" for Sclero. I also have hypothyroid, and possibly hypercalcemia, including an ulcer in my stomach and Diverticulosis... That is the time I lost 112 lbs
in 2 months..

my skin got dried out and is very thin, and I lost alot of muscle mass.. I look like a sharpay pup..lots and lots of loose skin....I show no signs of sclero on my hands or skin, however.. it is very thin and dry and saggy.. no muscle mass...I get very very cold and my hands and feet begin to hurt and stiffen up...

I was not able to go back to my gastro before she retired.. and I never was able
to get a final diagnosis... My regular MD doesn't think I have Sclero and so nothing
has been done about it for two years....

This last attack was for Thanksgiving and I was taking my meds that I had left over when I was in the hospital. Thank God, I had those left over. They kept me
out of the hospital this time...

Next time however... I don't know because I only have 1 left... just have to
see what happens...

I hadn't been able to go back to my Gastro MD for over a year because ... no insurance, no MD...Now, however.. when she retired, there went that...

Because of my circumstances, I do not qualify for Federal, State, or County programs.. My hubby is working for the state but does not receive any form
of benefits except comp time and sick leave...

His insurance with the military will not cover me as well...

So right now, I am just learning about this disease myself...

One thing I do know, is knowing that you are not alone and...

I know that I will LIVE my life to the fullest and best that I can

Inspite of the circumstances..

Thank you for taking the time to respond... I appreciate that...



#4 Sweet


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Posted 11 January 2008 - 07:34 AM

Hi Viv,

Welcome to the Sclero Forums! I'm so very glad that you've found us and we're so happy to have you. You will find a wealth of information, support and really great friends here that really do understand what you are going through.

Looking forward to knowing you better.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#5 WestCoast1


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Posted 11 January 2008 - 07:34 AM

Hi and welcome. I am also so glad that you found this forum. I am sure that many can share similar experiences with you.

It sounds like you may need to find a new rheumatologist. He can at least monitor your symptoms in case there are any changes.

Hang in there and keep in touch with us!


#6 vivdustbunny



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Posted 11 January 2008 - 10:57 AM

Thank you for your warm welcome and support...

Knowing that there are people out there who are going

through the same thing I am, and that I am not alone is

very comforting...

Bless you and Thank you...