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Biomarker for Diffuse Scleroderma skin has been discovered!


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#241 Kaycee

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Posted 12 April 2008 - 08:19 AM

Hi. I am not really new here as I was previously an ISN Support Specialist when the forum was on the MSN Boards. I have just rejoined now that I have a little more time to post. I was diagnosed with Diffuse Scleroderma and a host of other ailments in Februsry 2002. You can actually read my story at http://www.sclero.or...cee/a-to-z.html.

I'm just glad to be back among friends both new and old.

Much love,
Kim
Much love,

Kim


Be yourself...everyone else is taken.

#242 Sweet

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Posted 12 April 2008 - 11:04 AM

Hello Kim my buddy,

Nice to have you back.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#243 jefa

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Posted 12 April 2008 - 12:00 PM

Hello, Kim

So nice to meet you. I look forward to reading your story and getting to know you better.
Warm wishes,
Jefa

Carrie Maddoux
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#244 Kaycee

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Posted 12 April 2008 - 02:04 PM

Thanks for the welcome. I feel at home already since I already know so many of you and those I don't, I am eager to get the chance to know you. I've been taking some time just trying to read some of the newer posts and get caught up so be patient with me if I don't post much at first. Just glad to be back among friends.



Much love,

Kim



PS. Pam, glad to see you here, too, as a Support Specialist!
Much love,

Kim


Be yourself...everyone else is taken.

#245 Vicki

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Posted 27 April 2008 - 10:00 AM

Jefa, I have posted a few times, but just now discovering this thread!
:rolleyes: I eventually get it ha ha! I did post on the the where we live thread. I am from Kentucky and have been dealing with what I thought was arthristis for many years, taking non sterioidal medicines. I was still working and gradually things started going south. Fatique, pain, Reynaud's and finally consulted a rheumatologist. I did not have the typical lab work abnormals. ANA has always been negative, no high sed rates and on and on. Did have a skin biopsy with very vague diagnosis as suggestive....so my rheumatologist has made diagnosis on clinical presentations. I am taking methotrexate and predinisone. Dealing with pain in my bones and muscle aches and Reynaud's has been quite a challenge. I did have an episode of atrial fib. in 2006, but that is being controlled with medication. I think I have been lucky at this point not to have more problems. I do have skin thickening on my left leg around and below the knee.I am learning my way on this wonderful website. Hope I have not rambled too much!

Thanks,
Vicki

#246 jefa

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Posted 27 April 2008 - 11:32 AM

Hello, Vicki

I have seen your other posts and want to welcome you to this very supportive group. I am sure you will enjoy the forum once you find your way around. By the way, I used to live in Kentucky - Petersburg, population 400. I am now living in a slightly larger town in Scotland. :D
Warm wishes,
Jefa

Carrie Maddoux
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#247 Leslie R.

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Posted 03 May 2008 - 05:18 PM

Hi, My name is Leslie Rutherford and I live in New York. I am 35 years old, married and have 3 boys. I was diagnose with Scleroderma, Vitiligo, Lupus since June 2007. After suffering with these disease over 1 year and a half, had 8 biopysies, many test. I am not going to any meeting as yet, mainly because of my illness. I am glad I found this group to get more information and support. I am currently under 10 doctors care, several medications that help a little. My condition now is that my skin is tightening, itching, Raynauds Phenomenum, ulcers on my finger tips, pain in my feet and hands, acid reflux, coughing in my sleep.
I am still keeping my faith that someday my disease will go into remission and I can live a normal life.

#248 Guest_Sadie_*

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Posted 04 May 2008 - 08:26 AM

Leslie, Welcome to the board! I am so glad that you found us! This board has such wonderful people here and you'll get great info too! Feel free to send me a PM!

Sadie

#249 ShawMJ

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Posted 08 May 2008 - 06:21 PM

Well Hi all I'm from southwest La.you know the home of Hurricanes Katrina and Rita ,we're about 2 hours from New Orleans,but our Huricane Rita was Sept.24th and we didn't get all the publicity that New Orleans did.I have a husband of 44 years 4 grown children and 9 grandchildren.I love La.its the only home I've ever known we have wonderful food here,great people and I'm proud to say that I can still speak Cajun French.Just sorry I didn't pass it on to my kids.Its so nice to see where we're all from.I love this place! Mary-La.

#250 Millefleur

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Posted 28 November 2008 - 01:47 PM

[size=7]
Hi,
I am brand new to this site and waiting to be diagnosed. I am afraid I am scleroderma sine sclerosis. Have had positive ANA for 6 years,along with various aches, arthritic episodes. Only recently, in 2008, following the death of my mother did more symptoms show up: swelling fingers, reflux, and dyspnea. I've had Reynaud's for years - long before the other symptoms. Recent (1 week ago) CT scan shows interstitial lung fibrosis. This shocked me. Monday, Dec. 1 - an echo is scheduled to rule out pulmonary hypertention. A week or so after that I see a pulmonologist for the first time. Everyday chores are now making me slightly out of breath.

My mother died of scleroderma sine sclerosis. She was diagnosed a week before she died of heart and lung failure (PAH and lung fibrosis). Her death was somewhat quick, unexpected, and the reason was shocking. I am trying to stay positive but don't know how to get my mind around this. Saw a rheumatologist just once so far, in Sept.; took this long to get these tests scheduled. I am scared and dreading the next few weeks of diagnostic tests. I seem to be following in my mother's footsteps. I have no supports in place, other than my husband who is also trying to come to grips with this. This is all happening too quickly. Advice?

#251 Millefleur

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Posted 28 November 2008 - 03:46 PM

Constance,
I'm sorry to read of your concerns. I am going through diagnosis myself, with some pretty scary findings. It is difficult. Have you checked to see if there is a support group in your town?
Good luck,

Millefleur

#252 janey

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Posted 28 November 2008 - 06:17 PM

MilleFleur,
I'd like to welcome you to the ISN forums. I'm sorry to read about everything that you are dealing with right now. It does sound like you have a team of doctors working with you to find out what is going on and what isn't going on. I remember during my diagnosis period, it was one test after another; however, it was worth it just to know.

I'm sure after having lost your mother to this disease, it doesn't make any of this easy. Please know that a lot of new treatments have been developed in the past few years and many people have seen significant benefits. If one treatment isn't working for you, try another one.

Thanks for sharing your story in this thread. Please be sure to post in the main forum so more people can get to know you. I hope you echo has good news. Be sure to let us know.

Big Hugs,
Janey Willis
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#253 JJ-Knitter

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Posted 05 December 2008 - 12:08 PM

Hi Millefleur,

I'm a "sine" myself with ILD and PH and I can vouch for what Janey said: lots of new treatments available and more coming along all the time. Another good thing is once you have a diagnosis the doctors are much more willing to schedule all the tests necessary to keep an eye on things.

This forum is truly a wonderful place. We all love and care for each other and each new member is a very welcome addition to our circle of friends. We can ask what seems like the dumbest questions, voice our worst fears, share all the things that go on and somebody will invariably send just the response we need.

I'm sorry about your mother and that you're facing all this, but glad to have you as a new friend.

JJ-Knitter (keeping fingers warm stitch by stitch :rolleyes: )

#254 Danielle's Mom

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Posted 28 April 2009 - 05:04 PM

Hello-My name is Rhonda and I was diagnosed with Scleroderma in March of 2007. I live in Warsaw, Indiana, but after 8 specialists in the years of 2006 and 2007, it wasn't until my father and ex drove me 5 hours to Cleveland Hospital, I was diagnosed. I had been suffering for almost 1 year prior to being diagnosed. I have major skin and kidney involvement, with Raynaud's, GERD, and debilitating hands.

I am now 44 years old participating in the SCOT study in Milwaukee. I travel to Milwaukee every 4 weeks to receive the chemo-Cytoxin. The study involves 12 treatments, 1 every 4 weeks, and I just received my 10th treatment. I haven't been sick nor have I lost my hair. My quality of life has improved but I am not working and don't know if I will.

My mom moved in with me after living 23 years in Florida. She was diagnosed with CREST approximately 8 years ago. I have 1 daughter, 18 years old that also lives with me. She is expecting my 1st grandchild in August.

I have a 6 yr old Brittany Spaniel named Hudson and he is the love of my life.

#255 jackiejones

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Posted 22 October 2009 - 04:47 PM

Hi, I am a 42 year old nurse. I was recently diagnosed with SCL-70 one month ago. I am very scared and depressed about it. All good thoughts are greatly appreciated.