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#1 Tink1983



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Posted 28 April 2010 - 03:58 PM

Hi everyone! I would like to say I am glad this place exists :) It has provided me with much info on something I once knew nothing about) I still have alot to learn though lol..

I am a 27 year old mother of two very active and wonderful girls ages 7 and 3. I was diagnosed with the limited form of scleroderma about 3 weeks ago after a referral to a rheumatologist when blood tests from my Primary came back with a High ANA and positive centromere antibodies. I've had rapidly progressing Raynaud's, numerous gastrointestinal problems, the fantastic chubby finger syndrome :), rapid heart rate, severe pain in joints/muscles, fatigue, just to name a few. I am currently waiting on the results of hand and feet x-rays and a pulmonary function test. My heart echo showed unremarkable except that I have something called a pleural effusion, in my left lung (am wondering if this is due to the sclero?) and am waiting to get into a pulmonologist.

I was quite shocked at the diagnosis as my primary thought it was lupus and never mentioned sclero. My rhematologist ran some tests, took my symptoms into account, did a fingernail test of some sort, said this is what you have, handed me a pamphlet and sent me on my way to see her again in 6 weeks. Hopefully next visit will be more productive as the symptoms seem to be worsening. I am scared as to what the future holds, more for my children than for myself, but I am hopeful and also glad that now I at least have an explanation/diagnosis for all the crazy things that have been going on with my body. I look forward to getting to know you guys!


#2 Sheryl


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Posted 29 April 2010 - 01:24 AM

Lindsey, welcome to ISN forums. It sounds like you have all the proper tests scheduled. We look forward to learning more about you and how you are feeling. One of our staff will give you a better welcome than I, as I am just heading out the door and don't have a thoughtful response to make this morning. I'm still not awake and alert. I haven't even finished my first cup of coffee.
Strength and Warmth,

Sheryl Doom
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#3 relicmom1


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Posted 29 April 2010 - 02:26 AM

Welcome Lindsey!!! You have found a wonderful site for info and support. It is very common to be misdiagnosed.

It takes some of us years to finally get a correct diagnosis. I was first told I had rheumatoid arthritis, then they said no, you have lupus and then finally the sclero diagnosis was made. It took more than one rheumatologist to get to that point. Even though he was able to correctly diagnose it, he did NOT know about the disease. He did, over time, finally order all the testing that we need to have to monitor things, as he slowly read about the disease.

I finally decided that I needed someone who knows the disease, a scleroderma specialist. Here is a link on this site to a list of scleroderma specialists. I found a wonderful one at Johns Hopkins in Baltimore. They actually have a total department, including research, there. So they are up to date on all info.

I know how you feel about what the future holds for you. I and I think all of us, did when we were diagnosed (and still do wonder). I began the "diagnosis trip" about 10 years ago. I have many of the same symptoms you do. Scleroderma does not progress the same in everyone, it is different for everyone. Staying positive is important!!! Whenever you feel down, remember we are all here for you!!!!
Peace :)
Barbara aka relicmom1

#4 Jeannie McClelland

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Posted 29 April 2010 - 03:35 AM

Hi Lindsey,

Welcome to the site! We're a friendly bunch and always happy to see a new member. If you need any help navigating the site or want a link to a specific subject, you have but to ask.

In the meantime, I'm going to give you a link to sections on Fatigue and Emotional Adjustment. I think the first months after diagnosis were the scariest for me. As you become more familiar with how scleroderma will affect you, things seem to calm down. Just getting a diagnosis, getting all the baseline tests out of the way, and deciding on a treatment plan are big steps towards wellness.

I hope to see you around often and that you'll keep us posted on how your tests, etc. are going.

Best wishes,
Jeannie McClelland
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#5 Caroline F

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Posted 29 April 2010 - 06:59 AM

Hi Lindsey,

Just wanted to say hello. I'm new here too as diagnosed in January after symptoms that appeared, shortly after the birth of my son, were investigated. Like you I'm finding this website a great source of information - great emotional support to know you're not alone in all this too. I'm also more afraid for how this is all going to affect my son, but that makes me more determined to try to understand my symptoms and look after myself. Hope all turns out well for you.


Caroline :)

#6 warmheart


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Posted 29 April 2010 - 11:16 AM

Hi Lindsey,

Welcome to the forums! I also have limited scleroderma (with the minimum of skin involvement but I do have stumpy fat finger syndrome! :rolleyes: ). Ask all the questions you want--this is a great resource and there is always someone able to help.


warmheart :bye:

#7 Joelf


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Posted 30 April 2010 - 07:41 AM

Hi Lindsey

Welcome to the forum. :bye:

I also have limited Sclero which unfortunately has affected my lungs. I do suffer with Raynaud's & painful joints but thankfully no gastric involvement...yet!! I was diagnosed last August.

There is a wealth of helpful information on this site & I look forward to reading your posts. :)
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#8 Amanda Thorpe

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Posted 30 April 2010 - 07:54 AM

Hello Lyndsey

Welcome to the forum! It can be a shock when scleroderma is first mentioned but it's by no means the end.

We have a lot of information on this site that you may find useful, have a look at pleural effusion. for starters.

Take care and keep posting
Amanda Thorpe
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#9 susieq40


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Posted 02 May 2010 - 01:30 PM

Dear Tink,

Welcome to our support group and family! I know how overwhelmed you must feel. It is quite a surprising diagnosis. It takes a while to absorb all the info. I too have little ones along with this disease. Seems like one month I was running up and down the stairs with no problem and taking care of my two little ones plus two foster kids. Then, wham! I was having trouble catching my breath. After finally going to a pulmonologist, we discovered that I had Sine Scleroderma with Interstitial Lung Disease and Pulmonday hypertension. A lot to swallow. But turns out I probably had the disease a lot longer than we thought, just diagnosed as other things. But I want you to know, It's gonna be ok. We have the ability to adjust and adapt. I sure hope all goes well with the doctor's and you are able to find some peace and friendship here. I know I have made a few really good friends, and it helps me to know there are others that know how I feel, that this isn't just in my head. Welcome and keep us posted! HUGS

#10 Shelley Ensz

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Posted 03 May 2010 - 02:56 AM

Hi Lyndsey,

Welcome to Sclero Forums! I just want to say hello. I'm glad you found us and we all look forward to hearing from you more. :emoticon-hug:
Warm Hugs,

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

#11 Deb1million


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Posted 03 May 2010 - 08:11 AM

Welcome Lindsey,
and welcome to Caroline, too

This site saved my sanity when I was first diagnoised, as I had been feeling totally on my own with this strage and rare illness. My husband has a hospital/medical phobia/fear, so I really was on my own with no one to talk to.

Even though I had heard of scleroderma, as my cousin has it, it still sent me into a spin as there is some pretty scary mis-information out there! This site is now the only source of sclero information I look at.
I have multiple overlaps, including Lupus. But the doctors never swap one diagnosis for another, they just keep saying 'sorry you have this as well' and adding them to the list!

I hope we hear from you again soon :VeryHappy:
take care

#12 Snowbird


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Posted 03 May 2010 - 08:40 AM

Hi Lindsey and Caroline

I wanted to welcome you too....no doubt, you will find this site most helpful...try not to read anything on the net...it's not a good thing to do....and you'll get factual information here.
Sending good wishes your way!

#13 Sweet


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Posted 03 May 2010 - 08:41 AM

Hi Lindsey,

Let me add my warm welcome to you!! You've come to the right place for information, support, and friendship from people that truly "get" what you are going through. Sounds like your doctor has been very thorough, and that's a great to see! Take one day at a time, and remember we are here for you. :flowers:
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)