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New diagnosis/New Member

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9 replies to this topic

#1 anonymom



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Posted 09 April 2008 - 07:28 AM

Hello. I just got the diagnosis of "early" scleroderma a week ago. My doctor says he cannot yet tell me more about what kind of scleroderma it is. I have read the Mays book as well as the Johns Hopkins patient guide and am mildly freaked. I just don't understand what this means for me, for my life, for my future, and how I proceed. I have contacted a local support meeting, which meets monthly, and found this board.

Now what do I do???

#2 jefa


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Posted 09 April 2008 - 08:32 AM

Welcome, anonymom. I am sorry about your diagnosis, but we have all been there at some point. I am so glad you managed to make it into our chat this evening - it was nice talking to you. I'd say finding this forum is one of the best things you can do - this is a great place for information and support. In the right column you will find links to the other parts of the site where there are more than 2000 news items, medical articles and patient and caregiver stories to read. For starters, I would like to give you a link to our What is Scleroderma? page. I look forward to getting to know you better. Hugs, to you.
Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#3 Sheryl


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Posted 09 April 2008 - 09:00 AM

I would also like to welcome you to sclero forums. Our hour went by quickly today in the chat room. it was good to learn a bit about you. You will learn so much here about scleroderma by just asking questions. If you tell us things that have been happening to you, many will respond as to what you may have by the symptoms you are adjusting to. We try to be as informative as possible though we aren't doctors. We are here to give you hugs and support. We are in this together and all of us are at different stages of adjustment. We are moving on and through this disease. Once the shock wears off, you get back in control of your life and you deal with Scleroderma. We hope to hear from you often.
Strength and Warmth,

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#4 truman


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Posted 09 April 2008 - 09:09 AM


I know, it hits like a ton of bricks! First, please don't go surfing the web; it has the potential to scare you more than inform. Learn here. This is the first site I'm not afraid of. It's down to earth, sincere, informative and best of all, we all have some sort of the condition.

You'll find love, laughter, thoughts, photos, recipes and best of all, support anytime day or night.

I can't tell you how many friends I've made here. I've also learned there are locals in my area who are afflicted as well.

I too, started out as somewhat anonymous, because I was still in denial. My Avatar here is Tru for beloved reasons, but my name is Linda.

Please feel free to discuss your fears, apprehensions and any questions here on this site or personally PM us. With all the experience we as comrades have, you'll feel at ease, supported and extremely comfortable. I read you went to chat this afternoon. It's almost 4 and I completely forgot about today's chat. I'll have to wait till next time to chat with you.

You are definitely not alone, what a great group of people you lucked into on this site.

Yes, we're afflicted, but I've learned from this site alone, that I CAN get through this and that, and I have the support, love and opinions from everyone here.

Welcome aboard anonymom.........


It is what it is...........

#5 Karenlee


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Posted 09 April 2008 - 10:17 AM

Welcome to the forum anymom.
I was/am freaked also, you are not alone. Linda is right, please don't go surfing the web, it will only upset you. Just follow thru with your doctors. There are so many variants to scleroderma that you will drive yourself crazy.
This is a warm safe place for you to come and talk, ask questions, and just vent.


#6 Snowbird


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Posted 09 April 2008 - 01:59 PM

Hi Anonymom

Welcome too....this is a great place to ask any questions you want...there's alot of knowledge and understanding from everyone here. Did you doctor (assuming that is your family doctor) refer you to a Rheumatologist??
Sending good wishes your way!

#7 Bunky


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Posted 09 April 2008 - 06:00 PM

Welcome Anonymom,
I'm sorry to hear of your diagnosis, but you certainly have come to the right place for info and support. We are all here for you!

Take Care,


#8 Cheri


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Posted 10 April 2008 - 05:37 PM

Hi Anonymom,

Welcome to the forum. I'm sorry to hear of your diagnosis, but you have found a great place for lots of support. Everybody here is very warm and helpful, and there's lots of information. Feel free to ask lots of questions - I know I sure have.


#9 barefut


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Posted 10 April 2008 - 06:19 PM

Welcome anonymom,

You have come to the right place! This is where I wish I had started right after my diagnosis 2+ years ago. The best people and support anywhere, as you can already see from the warm welcoming replies you have already gotten.

Just wanted to say "Hi" and "Welcome" and try not to stress too much though I know easier said than done.

Check out my earliest blogs if you want to know how I handled my first few months after diagnosis. (Pretty much like most everyone else I'm sure....)

Keep reading and posting. Glad you are here.

#10 bmw


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Posted 13 April 2008 - 03:50 AM

Hi Anonymom, I would suggest you see a good ruematologist who could narrow down which type you have and be able to treat your symptoms. You've found a great website. It's good to know there are other folks in similiar situations who we can bounce things off of. Good luck, Birdman