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Melissa: CREST Plus

I was tired of being a member of the diagnosis-of-the-month club.

Blue Flower I am a twenty-eight-year-old single mother of two small children. When I was about fourteen years old, I started having problems with my joints. My parents took me from doctor to doctor. They all agreed I had some sort of arthritic problem, but they did not know what it was.

As I got older, I started to experience pain and sensitivity to cold in my fingers and toes. My doctor said it must be poor circulation due to my smoking habit and told me to quit. Of course, as a rebellious teen, I was having none of that. I just kept visiting different doctors and doing most of what they told me to do. My mother kept asking for answers. Some doctors told her it was probably all in my head. After all, each appointment got me out of school for a while. I swear there is nothing like knowing something is wrong with you only to be told you are being overly dramatic.

After the birth of my second child at age twenty-four, I really started to have problems. I had trouble walking at times, I was cold, and I had constant heartburn. I was also afraid I would drop my beautiful new baby because I just did not seem to have any strength.

Once again, I headed to the family doctor's office thinking I would be told to rest, take vitamins, quit smoking — in short, get a life and stop bothering them about this.This time was different.

Recently, I had started seeing a new, younger doctor who seemed to be pretty open-minded. He took a look at me and asked me in-depth questions, some of which seemed silly to me: "Do you take water to bed with you at night?" Well, of course, doesn't everyone? I thought it was normal. The answer is no, not everyone takes water to bed with them. After asking me about fifty questions, I still thought some of them were silly. He asked me to wash off my makeup. At this point, I was thinking this man has to be off his rocker. I knew he was off his rocker when he commented on the red veins and blotches on my face. Didn't everyone have them? I always thought that was why women plastered their faces. Hmmm, guess not! He drew blood, and the results were possible CREST syndrome.

Researcher that I am, I decided to look into this before my appointment with a rheumatologist. At that time, the only information I could find was extremely depressing and scary.

The first rheumatologist I saw did not believe there was a problem and insisted on drawing blood. After all, I was so young at the initial onset of my symptoms. The results came back the same. I refused to have anything more to do with the subject and doctors, because I was tired of being told there was nothing wrong with me. I was tired of being a member of the diagnosis of- the-month club.

About eighteen months ago, things became unbearable again. I went back to the family doctor. He was upset to hear about what happened at my appointment with the rheumatologist and that I was too upset and scared to go back again. He made another appointment for me with a different rheumatologist and insisted I keep it.

Well, I kept the appointment and am happy to say I finally started to get some answers. The answers are not always what I want to hear, but they are answers just the same. I am sorry to see there are so many other people suffering from this, but I am glad to see that I can now find more than just the scary and depressing information.

~ Update September 1999 ~

I want to let you know that since I posted my story, I have gotten responses from many people. I feel better knowing I am not alone, and that I now have other people with whom to communicate. Thank you!

To Contact the Author

New email address needed.
Old Email Prefix: lilmiss60
Story posted 9-23-99
Story edited VH1: JTD 8-12-03
Email note posted 01-18-05 SLE

Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
bout CREST
Difficult Diagnosis
Voices of Scleroderma Volume 1

This Story is Featured in Voices of Scleroderma Volume 1

Voices of Scleroderma Volume 1 The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

Go to Melissa H: Hereditary Hemorrhagic Telangiectasia (HHT)

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