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Linear scleroderma - chances of GERD

Linear GERD

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#1 Louxx

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Posted 13 January 2013 - 02:17 PM

Hi everyone,

I've had linear scleroderma on my left leg from the age of 8 (I'm now 23)

I was always told I will never have the systemic version of scleroderma, but over the last month I've had stomach problems. My doctor has now decided to send me for a Scope exam to find out what's wrong.

I'm just wondering if anyone has experienced stomach/digestive problems as a result of being diagnosed with linear scleroderma?

Look forward to hearing some answers,
Louise

#2 Joelf

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Posted 13 January 2013 - 11:48 PM

Hi Louise,

Sorry to hear that you're experiencing worrying stomach problems.

Linear is a localised form of Scleroderma and although it is rare to develop localised and systemic together, it is possible, as Amanda can testify. It's a good thing that your doctor has sent you for a Scope exam and hopefully that will give him more idea of any problems.

Please note that I have no medical training (apart from a now out of date first aid certificate! ;)) but I know how easy it is to attribute every symptom and illness to Scleroderma, whereby it may be completely unconnected. When you visit your doctor for the results of the Scope, I hope that your fears are unfounded.

Kind regards,

Jo Frowde
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#3 Shelley Ensz

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Posted 14 January 2013 - 10:40 AM

Hi Louise,

Welcome to Sclero Forums! I'd like to add my two cents worth, which is that it is extremely rare for people with localized scleroderma to develop systemic scleroderma. There is no such thing as a natural progression, although many people do seem to labor under that impression.

However, about 25% of people with localized scleroderma, such as linear or morphea, will develop one or two symptoms outside of just skin involvement. That does not mean they are "progressing" to systemic. If you have been in remission for many years, the odds are that you just might happen to be like any other normal person and are developing more ailments as you go through life. Stomach problems, indigestion, and heartburn are extremely common in the general population. Plus they can tell with the testing whether the problems are due to scleroderma or not.

I know this is so trite to say and not at all easy to put into practice, but please try not to worry. Overall, stomach problems are very treatable and odds are terrific that you'll be on the road to better health quite soon.

What's the worst of all is that you harbor any concerns about developing systemic, but I do know that the fear of it is widespread among people with localized. The statistical odds are that you have a 0% to 4% risk of ever developing systemic. That is definitely an increased risk compared to entirely healthy people, but it still means that you have a 96% to 100% odds of never getting systemic. Your statistical odds of getting heart disease, diabetes, and cancer are much higher so they deserve the most attention.

Many scleroderma experts have never encountered a single case of localized and systemic overlap in their entire career. Some of the cases may also be people who really had systemic all along, but who were simply misdiagnosed at first. About 2% of people with morphea have anti-centromere antibodies, and those are the people at greatest risk of developing systemic.

And then of course we have our lovely Amanda, who is an exception to just about every rule, and her coolest party trick of all is that she has managed to definitely have both systemic and morphea without any antibodies. That's just to prove, there is an exception to every rule.

We all know how difficult it is to balance our concerns against the available facts. So please remember that we are always here for you and we hope that you will also be here to welcome and comfort others, including those who harbor similar concerns.

For more information about the risk of localized with systemic, please see: Complicaton of Morphea Scleroderma.

I hope that knowing the facts will help you sleep a little better at night. And I hope they find a way for your stomach discomfort to resolve, soon. Please keep us posted on your progress.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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#4 Louxx

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Posted 14 January 2013 - 01:42 PM

Hi,

Thanks for the reply.

That has made me feel a little better.

I've become a little bit of a hypochondriac ever since I had glandular fever over a year ago and still haven't seemed to be able to combat the tiredness it brought with it.

When I get the exam and results, I will make sure to let everyone know how I got on :)

Louise.

#5 Shelley Ensz

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Posted 15 January 2013 - 02:45 PM

Hi Louise,

I sure do understand how you feel. Fatigue can make us always think there must be a really serious underlying cause for it. Or we have one explanation for it but we keep on searching for more causes anyway. I don't think that makes you a hypochondriac unless you go really overboard and don't accept reasonable explanations or reassurances from your doctors. Fatigue really can -- and very often does! -- exist by itself, or as the lingering aftermath of an illness, without a (new) dreadful terminal disease as its cause.

The thing with fatigue is it can make us FEEL like we are going to die in a big hurry. When we have new onset of fatigue it is definitely time for a doctor's visit. Knowing when to quit pushing about causes for fatigue is tricky, especially if we don't have any new symptoms to help point in any particular direction.

If it helps you at all, many of us here live with ongoing fatigue, to either a greater or lesser extent. You deserve accolades just for getting out of bed each day, when you can, and not any guff about hypochondria. I mean, unless you're totally over the meadows and through the woods, which is sure doesn't sound like you are. :emoticon-dont-know:

Here are some spoons to help you get through the rest of today. I'm sure others will chime in about the Spoon Theory.

:spoon: :spoon: :spoon: :spoon:
:emoticons-group-hug:
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.

#6 Joelf

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Posted 15 January 2013 - 11:30 PM

Hi Louise,

Here are some spoons to help you get through the rest of today. I'm sure others will chime in about the Spoon Theory.

:spoon: :spoon: :spoon: :spoon:
:emoticons-group-hug:


I'm very sorry that you're feeling under the weather; fatigue can be so debilitating.

Here's a link to The Spoon Theory , which I do hope you'll find helpful and interesting and also a few more spoons to keep company with the ones Shelley's given you.

:spoon: :spoon: :spoon: :spoon:

Kind regards,

Jo Frowde
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#7 Amanda Thorpe

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Posted 18 January 2013 - 04:41 AM

Hello Louise

Welcome to the forums! Have a look at our linear scleroderma video and our fatigue video, although the fatigue video is aimed at fatigue with scleroderma, you'll be facing the same problems with it, whatever the cause.

The fatigue video will confirm it's not all in your head but rather a real issue that has to be managed and the linear video will confirm what Shelley has said, a person can have symptoms outside of skin involvement but this does not mean the systemic form of the disease is developing.

Take care.
Amanda Thorpe
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