Shelley Ensz

Welcome New Members!

21 posts in this topic

Hi Annie,

 

Thanks for sharing!

 

"It's funny because all of my symptoms are just my new "normal" so I forget that other people aren't like me and are bothered with the symptoms I have every day."

 

How very true! Isn't it amazing how we adapt?!


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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I'm new here on the forum.

 

About 7 months ago I was diagnosed with limited scleroderma (CREST Syndrome). I originally saw my doctor for swallowing issues. After an endoscopy and an esophageal motility study, we found out that I have zero motility in my lower esophagus and no pressure from the sphincter muscle leading to my stomach.

 

I am taking omeprazole to help with the acid, and nifedipine for Raynaud's. I've had the Raynaud's since I was a late teenager, but the swallowing problems started about 4 years ago. I never had health insurance until I got married last year, so never saw a doctor until then. What a surprise!

 

My primary doctor sent me to a GI specialist. The GI specialist did a bunch of tests and sent me to a rheumatologist. The rheumatologist did a couple of tests and told me I have CREST, I have since decided that I need a new one. (The search begins!) There aren't any scleroderma specialists in my area at all, and I can't afford to fly all over the country, but there's got to be someone nearby that knows a little more.

 

It's good to see other people going through some similar situations, so I'm not completely alone. My husband tries to be supportive but doesn't understand what I'm going through at all.

 

:thank-you:

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Hi Tw1nkles,

 

I love your screen name! Welcome to the Forum. I always say I'm sorry you found us because of your diagnosis, but really, we make the nicest friends here, so I'm not entirely sorry. :blush:

 

Have you found your way around the main site? There is a lot of information both about CREST and esophageal dysmotility in the section on Gastrointestinal Involvement that you will probably want to look at in due course. Other good resources are the patient stories and doing a keyword search within the Forums.

 

I hope to see you around!

 

Best wishes,


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

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Hi to all the newbies! I was diagnosed 2years ago with limited scleroderma and if I hadn't found everyone on this site I think I would have given up mentally. I was so scared and uninformed as to what to expect and were to go for a friendly ear to listen to me. It's been my life line in a very unusual way dealing with a very unusual disease. To any of you out there take the first step say/ask something. Don't be afraid, most of us are at times but the friendship people will give you here helps you to not feel alone in a uncertain world. Go for it!

 

Lynn xx

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Hi Tw1nkles

 

A very warm welcome to this friendly and informative forum.

 

I certainly think it would be beneficial for you to consult a Scleroderma specialist as it is such a complex disease and sadly a lot of rheumatologists don't really understand it fully.

 

Like you I have also been diagnosed with Limited Sclero, although thankfully I don't have any gut involvement at present (fingers crossed!! ;) ) Unfortunately my lungs have been affected but due to my receiving excellent treatment, thankfully my quality of life is still very good, with the added bonus of being able to bore my long suffering husband and friends with every minute detail of my illness! :lol:

 

I do hope that you will post often and let us know how you are faring.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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