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CREST Syndrome

8 posts in this topic

Hi everybody.


My name is Cécilia and after a blood test the doctor was looking for some rheumatism illness. My anticentromere are 1/5020 so he asked me to go and see a rheumatologist who asked me lots of questions, to which I answered no most of the time; then he took a look at my hands and feet, he then said that I had the CREST syndrome anitibodies but no sign of it.


I did tell him that I had heartburn for the past 20 years and trouble with the bottom of my oesophagus, like if I could feel the food getting into my stomach and I also told him that from time to time with the cold my fingers are a bit white but it never lasts only sometimes and this has happened for many years. I have the ends of one or two fingers getting white and dead but never for more than a few minutes.


He said the CREST syndrome could stay quiet for some years, 20 years or never. I'm going to see an other rheumatologist who's in Scleroderma; I have been reading a lot on the web and must say that I'm really scared of what I read.


I'm 46, have been suffering from tiredness since my first son was born 22 years ago, I also always have pain at different places, back, legs, arms, fingers, migraines, feeling cold, have had vertigo, feeling of lump in my throat, I mean I'm hypochondriac and always been listening to my body !


Could I have this CREST syndrome with just the stomach and oesophagus problem and if this has been there for so long I guess it has to be the limited or CREST? Could I have just have those two symptoms without all the other? I do have red spot on my chest but so does my husband so I don't think it's the T of CREST.


I'm also scared because I read on the web that sometimes you have the diffuse scleroderma with the centromere positives; can you help me?

Oh and sorry for my English; I live in Belgium and speak French.... Thanks to all for your time.

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Hi Cecelia,


Welcome to the Forums! I'm sorry you are worried, but don't believe everything you read out on the Internet. We try to make sure all the information on the website is accurate, reliable, and as up to date as possible. In the Forums you can talk to a lot of people with some form of scleroderma and a lot of years of experience with the disease. Hopefully we can reassure you.


I'm not a doctor, have no medical training at all, and don't even know where the aspirin is in our house, but it does sound pretty likely that you could have CREST. You don't have to have all the letters, just the R and E will do. As it happens, I think those are the two most common symptoms and if you read a lot of different posts here in the Forum, I bet that you will find most of us have some form of oesophageal problem and some degree of Raynaud's Syndrome.


One of the frustrating things (but also a good thing) about scleroderma is that each case is pretty unique. There are some common things that most people experience, but many more that people will not get, will perhaps have a milder or more severe degree, and when these symptoms show up varies a great deal too. So although it is hard to predict what might happen, the good part is that you might never, ever, experience anything too severe.


When I was reading your post, I was struck by how long you have had some symptoms of what could be CREST (muscle aches, fatigue, etc.). I think that would actually be a hopeful sign that your illness might never worsen.


Your English is great! You certainly wouldn't want to try and understand my French. ;) I hope you'll post often and let us get to know you. I'll be interested to hear what the scleroderma expert has to say.


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 Cecilia,


A warm welcome to these forums!


As Jeannie has said, it's very easy to read a lot of incorrect information on the internet and then frighten the wits out of yourself; I know - I've done it!! :rolleyes: Scleroderma is a very complex disease which can manifest itself in all sorts of different ways in different people which is what makes it very difficult even for an expert to diagnose. It's a very good thing that you are actually going to see a Scleroderma expert though.


We have a Link to CREST, a Link to Raynaud's and also a Link to Gastrointestinal Involvement all of which I hope you will find helpful and informative. Like Jeannie, I'm no doctor but as she has said it's quite possible for you to have Limited Scleroderma and have the gut involvement and Raynaud's but none of the other symptoms of CREST.


The good news is that now you've found our forums you are among people who know exactly how worried and scary a diagnosis of Scleroderma can be and can fully empathise with you. Do keep posting and let us get to know you and please don't worry about your English - it's a jolly sight better than my French! ;) :blush:

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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I'm so happy you answered so fast :emoticons-yes: but I did make a mistake. The heartburn has been there for 20 years but dysphagia is only the last 7 years and comes and goes.

I must say that I have three children, two married and a boy who is 15 and giving me a hard time so as a stress person I always believed that my body was showing my anger :temper-tantrum: but ever since that blood test, I spent all afternoon reading stories on the forum nd you have stories where you say that some people have the antibodies but not the symptoms! Can it be the same with the centromere? And why do they say over here in Europe that centromere is mostly CREST and here it's seems that the blood test is not enough to diagnose the illness?


I must say, I'm lost but so thankful I met this website. You' re just great . :thank-you:

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Hello Cecilia


Welcome to the forums! Needless to say I am not medically trained either but your symptoms sound pretty typical of limited systemic scleroderma aka CREST.


I'm so glad you have found the personal stories helpful, they are one of the first things I read on this site and I am so glad people share their experiences for the benefit of others. Maybe you'll share yours some time.


Take care and keep posting.

Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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I would also like to welcome you to the forum(s), cecilia! :emoticons-group-hug:


I feel you will make friends and gain insight by way of other members (who are REALLY family to the rest of us) and their personal experiences!


I am so very glad you found your way here and look forward to our hearing from you often!

Special Hugs,


Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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This forum is certainly the BEST in my opinion! I was diagnosed at age 17 (now 40) with CREST, with an updated diagnosis of systemic scleroderma. Warm welcome to you. Everyone has so many different symptoms of this disease, we are not all the same. BUT, we have each other here and it has helped me a great deal to stay away from my own pity parties. Much luck to you :spoon:

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