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#1 SYLGAS

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Posted 23 April 2009 - 08:58 AM

Hi All,

I am new to the forum and have never entered a chat room/blog, etc. I was recently diagnosed with Scleroderma, in February. We're guessing I've had the illness for the past 2-3 years? At least that's when the Raynaud's started, which was misdiagnosed as Arthritis. I was also misdiagnosed with Acid Reflux about 10 years ago. So it's possible I've had Scleroderma for that long.

I was referred to a rheumatologist who had pulmonary tests and an echocardiogram run. So far both lungs and heart are fine. I seem to have more problems with my hands, face and my digestive system. It seems I can see changes in my physical appearance almost daily and my right hand in particular has started to curl. Any suggestions, ideas, recommendations?

Thanks and take care!

#2 Francine

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Posted 23 April 2009 - 11:15 AM

I just wanted to say Hi....
I am also new to this site, My mom was recently diagnosed finally. They misdiagnosed her with GERD, Lupus, arthritis.

Hope you get your answers soon.

Best luck

~Francine
Francine

#3 Jeannie McClelland

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Posted 23 April 2009 - 11:24 AM

Hi Sylgas,

Welcome to the Forum. I'm sorry you needed to find us, but isn't wonderful to not only have a correct diagnosis, but a place to go to find out reliable information about AND a lot of new friends? And it's great news that your heart and lungs are OK, isn't it? That's always a worry.

What suggestions is your doctor making for treatment? As you know, none of us here are doctors and can only give advice based on our own experience, but if you added up all of our experience, we know a great deal.

Having said all that, I think the first thing I'd suggest is to ask for physical therapy for your hands. The earlier you start working on keeping mobility, the better off you'll be.

We do have a ton of information on the main Sclero.org pages. Have you found your way to them? If you're having 'technical difficulties', please stand by and someone (me) will assist you. laugh.gif Let me know if you need help, OK? Also let us know if there is a specific topic like Raynaud's or GERD (reflux) that you'd like to know about and we'll provide clickable links. Hey, you didn't even have to ask! See how easy it is?

And here's your first warm Forum Hug!


Jeannie McClelland
(Retired) ISN Director of Support Services
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International Scleroderma Network

#4 Jeannie McClelland

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Posted 23 April 2009 - 11:29 AM

Hi Francine,

Welcome to the Forum. I'm sorry your mother has been diagnosed with scleroderma. I think it's harder to be a family member than the person with the illness. It's great that you've joined us, though. I hope we can provide you with support, information, and friendship.

We're always good for a hug, an ear to listen or a shoulder to cry on. We're often pretty good for a laugh too!

I hope we hear from you often. And here is your first Forum Hug, plus an extra one for your mom.
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#5 jillatk

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Posted 23 April 2009 - 12:31 PM

Sylgas,
Welcome to the forum. Glad you found us. You are in a similar boat as me. I was diagnosed in February and started having problem about 3 years ago. Sounds like all the major systems have checked out okay, which is good. Now you need to get after the hands and stomach issue. Jeannie gave you some great links. Inform yourself, but don't get overwhelmed. What you read can be scary and overwhelming. Just remember that this is a very individualized disease and no one can predict how it will manifest itself at any given time in your body. The best recommendation I can give you is to find a doctor who listens and takes you seriously. Go to your doctor appts with a list of the symptoms that are bothering you and be persistent in getting some kind of a response.

You will find that this is a test intensive disease. There are lots of medicines on the market to address specific symptoms -and that is the most important thing - manage symptoms before they do damage. Keep good notes on how you are responding to the meds and give your doctor that feedback.

Good luck and keep coming back for info and support - you will find both in abundance here.

Jill

#6 Shelley Ensz

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Posted 23 April 2009 - 01:26 PM

Dear Sylgas,

Welcome to Sclero Forums! I wanted to be the first to give you a warm hug but Jeannie beat me to it. That just totally bums me out for as you may have discovered our group is into Competitive Hugging. ;)
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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

#7 Peggy

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Posted 23 April 2009 - 01:50 PM

I wanted to wish you a warm welcome. You have come to the right place to vent, ask questions, and get support.

With regard to your hand curling, my doctor has recommended that I place my hand down on a table and stretch the fingers out and do this numerous times a day. This will hopefully try to keep it from curling. I also know of some people who have splints made for their hands so as to keep them stretched out. I have a friend who just got fitted for them and has one set that she wears during the day and a different set that she wears at night. All I know is that my doctor said to keep stretching your fingers and hands out as much as you can.

This disease has so many different ailments and affects everyone differently. I have the terrible fatigue and terrible muscle pain and GERD issues that I fight with on a daily basis. This disease has changed my life dramatically and it took me a while to get used to that but I have come to find that I can't fight it and when I'm tired I rest, when I hurt I don't try and push myself, and I try to avoid everything I can that can irritate my GERD issues.

I wish you all the best. Please keep us posted on how you are doing.

Warm hugs,

Peggy

#8 Snowbird

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Posted 23 April 2009 - 02:39 PM

Hi Sylgas

I just wanted to say hello and welcome you too... you've come to the right place.
Sending good wishes your way!

#9 Buttons

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Posted 23 April 2009 - 09:37 PM

Hi Syglas

Just to say welcome and everyone here is friendly & supportive.

Take Care

Jensue

#10 Sweet

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Posted 24 April 2009 - 04:07 AM

Well hello and welcome!

Really glad you've joined us. Big hugs to you! I'm sorry to hear about your diagnosis, but it's so nice to be among people that truly get it! Welcome! Pop in here anytime that is convenient for you, vent away, post questions, we'll be here for you. :)
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)