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Janice

I'm New

12 posts in this topic

I just went to the doctor, Rheumatologist, last week and she said that she is 90% sure I have Scleroderma. Then, she said to me 4 times, "I hope nothing bad happens to you." Like are you trying to scare the stuffing out of me? She says she is certain that I am in the early stages. I then had to get blood work, x-rays, and urine samples. Now I have to visit a Dermatologist and get a cardiogram and the like done. Anyone got any words of comfort?

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Hi Janice,

 

Welcome to Sclero Forums. We're glad to have you here, of course, it's just too bad it's because of scleroderma. At least your doctor shows she cares, and hopes that you will be okay. I'm with her on that!


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

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

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Welcome to the Forums, Janice. I am very glad you found us but sorry you may have scleroderma. The initial shock of hearing this news has frightened all of us at some point, but you have come to the right place for information and support. I am actually quite surprised that your rheumatologist is so quick to make a diagnosis without the results of all the tests. Most of them seem to hesitate to commit! Please let us know the results of your tests.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi Janice,

 

Welcome to the forums! I am glad you found us, but sorry it is because you might have scleroderma? What symptoms are you currently experiencing? It is so normal to be frightened...I think waiting and not knowing are some of the hardest things. But, hopefully from reading this forums you have come to realize that many of us lead very full lives despite having this disease. AND, it affects each one of us so differently! Thus, even if the doctor does confirm a diagnosis of scleroderma, that does not really tell you anything with regard to what the disease will or will not do, where it will or will not go. No one can predict the progression of the disease. I do think it is a positive thing that your doctor seems to be on top of trying to get a proper diagnosis. The most important thing, to me, is to get proper treament for current symptoms regardless of the actual diagnosis.

 

Please do keep us posted!

 

Again, welcome!

 

Warm wishes,

Heidi

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Hi Janice,

As Jefa said, the initial words "scleroderma" are scary and we usually all go home and google like crazy, only to be more scared.

 

What are your symptoms?

 

I know it's scary to be told you may have a disease (especially one you probably know nothing about) but try to be calm and wait for the test. It could be nothing or it could be something very easily treated.

 

I hope it is not Scleroderma but honestly, even if it is, it's not the worst thing that could happen. You learn to live with it, just like anything else. It's getting over the initial hump that is most difficult, so please stay on the forum and let us help you through the hard times.

 

It appears that you are on top of it by seeing the DR. in the early stages and that is key.

 

Take Care and keep asking us questions.

Jennifer

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Welcome Janice~

I am sorry to hear that you are going through some health issues. This forum is a great place to ask questions, find answers and just feel at home.

 

What brought you to see the Dr.? I am sure it is hard to wait for results that are so important. Hopfully once you do a follow up with you rheumatologist, you will be able to discuss the treatment if needed.

 

In the meantime breath easy and take care.


*WestCoast*

 

********

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Janice,

Welcome to the forum! You have come to the right place for information and support. It is scary when you first get diagnosis. I was diagnosed with CREST(limited scleroderma), Sjogren's, and Fibromyalgia in December 06. What symptons are you having at this time?

Take Care and I send good thoughts your way,

Nan

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Thank you to all who wrote in response to my post. I am experiencing shortness of breath, but I was diagnosed with Asthma about 5 years ago. I have a rash, (red bumps and dry, itchy skin on both arms up to my elbows,) both hands are shiny, dry, and the skin is very tight and painful, I have trouble swallowing, dizziness, severe headaches, swollen knees and feet, and am extremely tired ... I honestly cannot get enough sleep. I was also diagnosed with >>> forgive my spelling >>> Rheynods Phenomena a yr ago in April. As a child, I had Rheumatoid Arthritis as well. I just feel under the weather all the time.

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Hi Janice,

 

You found the right place for information, sympathy and support. After awhile, everyone here feels kinda like family.

 

Being able to come here and meet all these caring, sympathetic, supportive people and share how scleroderma has affected my life and read how it has affected other's lives, has made such a positive impact on how I have been dealing with this disease. I know I would not be doing 1/2 as well without this place.

 

So come and ask your questions, share your worries and your fears let us help you through your hard times, we will be there. And soon you will find that you will be able to be there for others too.

 

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Janice,

 

Welcome to the Sclero Forums. I'm sure sorry to hear you may have scleroderma. Take one day at a time, wait for results and as you have questions throw them our way! We'll be more than happy to help you.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Janice,

Welcome Darlin'. You certainly have come to the right place for words of comfort. There are so many of us that have gone through this initial phase of "Do I have it?" Yes, it's scary, but for me, it was so less scary once I finally found out what was wrong. No knowing what was going on was really scary. Once scleroderma was determined to be the culprit of my various symptoms, we were able to start treatment.

 

The battery of tests you are going through is normal and quite necessary. Scleroderma can cause so many things that it's good to catch things early and to create a baseline for those things that are not affected so, if something changes, it can be catch early. Having RA, you know the drill! Both RA and Scleroderma are connective tissue diseases and their are many of this forum that have that overlap.

 

Please let us know how your tests turn out and what your rheumatologist does as the next step. We're here for you!

 

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)

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Hi Janice---

 

Welcome to the board. Everyone here is really kind and they understand. And explore the website sclero.org it has more info on scleroderma than anywhere else in the world.

 

I just wanted to tell you this disease is not a terminal incurable disease. It used to be. But now there are many new medicines and treatements that can stabilize, and even cure it. So get top medical attention. Do your research (check out stem cell transplants). And don't start planning your funeral. Many people are on this site have had the disease for 20 years plus and are managing to live their lives. There are stories on this site of people who had stem cell transplants and who improved dramatically and have gotten better.

 

Just wanted you to realize the reputation is worse than the real prognosis today. You can be treated, you can improve, and you can stabilize and lead a productive life.

 

Of course, bad things can happen too. But it's not automatic and the odds are in your favor.

 

Please try not to get too scared.

 

Michael In Florida

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