Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

How I Found Out I had Crest Syndrome/Disease

CrestLady
  • By CrestLady
  • Posted July 3, 2009 at 6:46 pm · 5 replies
  • Shared with the public
0 Recommendations

After being misdiagnosed by one doctor as having rheumatoid arthritis, I found out fr. another rheumatologist that I didn't have RA. I have Crest, specifically three of the five symptoms. I was so glad not to have RA that I really didn't mind the relatively mild symptoms I was experiencing.

The thing is Crest is an autoimmune disease and I suspect that f. many of us it's not much of a problem until something serious goes wrong w. us physically and our immune system reacts by fighting our own tissues, our own bodies, instead of healing us.

This happened to me many years after my initial diagnosis of Crest and I'd love to hear fr. others what their experiences have been w. the condition.

Posted in:

Explore topics in this journal entry and replies:

Systemic sclerosis Hernia Surgery Arthritis Pain Rheumatoid arthritis Scleroderma Stress

5 replies

nyitalian

hi, i was diagnosed with crest myself ,but my mrheumie told me i have other diseases along with it. crest is also known as systemic sclerosis or scleroderma, i have rheumatoid arthritis , connective tissue disease and other diseases which is common to have overlapping diseases along with crest ,if you dont have anything else than thats good .

CrestLady

I definitely feel lucky w. my Crest because after having a routine colonoscopy (during which a polyp was removed) I suffered a perforated colon and many complications and almost died so I'm very lucky to still be alive.

IF you have Crest and get a colonoscopy PLEASE discuss beforehand the possibility of having a needle biopsy for any polyps rather than the removal of them! The standard procedure f. polyps is to just remove them. Even though the doctor KNEW I had Crest she removed the polyp and within a few weeks the wound grew instead of healing and I ended up in deep trouble. An emergency colostomy, sepsis, lots of complications, including incisional hernia, being on a ventilator f. weeks, in a coma, yady yady.

I've been told that scleroderma/sclerodactyly is the S in Crest. C is f. calcinosis which is a buildup of extra calcium in the joints (I don't have this part), R is for Reynaud's Phenomena, E is f. esophogheal (sp) disfunction, and T is f. Telangectasia. If you look on the Internet try not to panic when you see some of the entries for these things. They seem to show just the WORST, most dramatic, stuff. Good luck to all!!

nyitalian

hi crest lady, well, for years there were saying it was my imagination ,that i was basically crazy then year after year i would have surgery because sever\e pain, ab . pain, i had scar tissue developing over and over again ,i have sytemic kind of scleroderma, and it effects me every day, i also have other diseases along with it overlaping which is common they say, i take plkaquenil, kapidex, celebrex,synthroid, bental, it effects my digestive system, joints, muscles,hands, skin,swalowing,dryness in mouth,for me it was subtle until i started getting more problems more infections

CrestLady

Good grief! You've really had a rough time. What benefit did you get fr. the surgeries? How many have you had? Weren't you going to have one this month? I guess I should be grateful I've only had three in the past six years. My surgeon at Johns Hopkins wants me to have one more but I really wonder if that would be the end of it. Hernias just seem to recur.

Don't know if you ever think about why this happened to you. Ever since I found out I had an autoimmune disease I've thought that I got it fr. being very stressed f. a long time. It's weird in a way but, since I almost died six years ago, I don't stress over stuff the way I used to.

nyitalian

hi all ,i appreciate all the replies i had mutiple surgeries i cannot even count, and scar tissue or fibrosous tissue is developing all over body so it only helps temporarily i relize then, it grows more tissue basically my body attacks itself, i have hadmrsa 3 times, it almos
t killed me, i really do not want anymore surgery.

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

You