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What should I expect next?

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#1 Jazi



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Posted 03 November 2015 - 06:51 AM

Hello everyone,


There are no Scleroderma specialists in my area but I am seeing my second Rheumatologist soon.  Hopefully this one will have more answers.


I was diagnosed with Scleroderma in early 2013.  I have had digestive problems since May of 2012.  I still have digestive problems, diagnosed in 2013 with Lymphocytic Colitis and in 2014 with small intestinal bacterial overgrowth (SIBO) and having a dreadful time getting rid of it.


I have no skin involvement or Raynaud's, thank goodness.


I know everyone who has this has different symptoms and it attacks different organs.  This frightens me.  I read the digestive system is the first.... does anyone know what's next?





#2 Joelf


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Posted 03 November 2015 - 10:16 AM

Hi Jazi,


Welcome to these forums!


I'm sorry to hear that you're suffering with digestive problems; a friend of mine had SIBO which is a very unpleasant and persistent condition to deal with.


As scleroderma is an extremely complex disease, I'm afraid it's impossible for me to advise you of the possible course it might take. Although digestive problems are a common symptom, in my own case, my first real systemic symptom was actually lung involvement and thankfully up this time (I've been diagnosed for six years) I've never suffered with any gastrointestinal involvement. One of the little idiosyncrasies of scleroderma is that it affects all sufferers differently, which makes diagnosis and treatment very difficult.


As you've been unable to find a Scleroderma specialist in your area, I've included our link to Scleroderma Experts and also Scleroderma Gastrointestinal Involvement which I hope you'll find helpful and informative.


Kind regards,

Jo Frowde
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#3 Jazi



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Posted 04 November 2015 - 08:45 AM

Thank you so much Jo :flowers:

#4 Amanda Thorpe

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Posted 08 November 2015 - 05:57 PM

Hello Jazi

Belated welcome!

There's actually no first, second or third symptom. Sure there's a familiar pattern that scleroderma can follow but being the wily, uncooperative critter it is it can do almost anything and often does.

I have atypical scleroderma, my symptoms started on my shins, went down then up during which time my forearms became involved and then my hands.

Of course, severity varies as well as the order of symptoms.

I have had scleroderma now for 8 long years and although it's no barrel of laughs for sure, it's not the end of the world either.

Take care and keep posting.
Amanda Thorpe
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#5 judyt


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Posted 09 November 2015 - 10:29 AM

. . . . . . . and I have had Systemic Scleroderma for 49 years and counting.


There is no knowing with this beast.   It will do what it likes.



#6 Shelley Ensz

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Posted 11 November 2015 - 07:09 AM

Hi Jazi,


Welcome to Sclero Forums.  I'm sorry you have scleroderma with gastrointestinal involvement.  I'm not sure its much of a comfort to say that's there's no predictable pattern with the development of scleroderma symptoms.  It's sort of a catch-22, that most of us have no idea what to expect next. 


Another confounding thing is that the natural course of scleroderma is to wax and wane.  That is, it gets worse -- and then better, even without any treatment at all!  That aspect is so strange that it makes discovering treatments very difficult. Researchers are just positive they've found a useful treatment, only to find out way down the line that it was only the natural course of scleroderma they were witnessing, and not the result of their grand treatment.


Therefore, one of the biggest challenges of scleroderma is to wrap our head around the idea that things could take a turn fo the worse any day...or, they might linger or even improve over the next forty or fifty years.  Should we worry?  What should we worry about?  Should we not worry at all, and throw all caution to the wind?


What I've found is that worry doesn't help any of us at all. Neither does tuning it all out and throwing all caution to the wind. But, educating ourselves on the illness, becoming aware of potential pitfalls but not agonizing over the prospect, and developing sturdy attitudes that can see us through thick or thin can be very helpful indeed!



Warm Hugs,

Shelley Ensz
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#7 smile4you2015



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Posted 22 November 2015 - 07:46 AM

I have been diagnosed with Progressive systemic sclerosis (SSc) since the beginning of 2015 but I actually understood what the disease meant in October 2015 because my doctor didn't tell me about it.


So I understand about it through Google and I read a very bad prognosis and I became frightened of the average expectation of life. Now I read in the forum and I see that any people live more than 10 years with this disease.... Wonderful.


Actually I am still single (I am 32 years old) and I want to have husband and a child..... I will start to read about the disease and the pregnancy and healthy baby. My doctor said that there is not a problem to have a baby but I read different opinion.