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Believe I have Scleroderma....


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#1 Pinchy

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Posted 14 July 2015 - 03:39 AM

Hey guys. I hope this post is okay to make. I have rheumatoid arthritis and have had it for about seven years now. A year ago I got really sick. Doctors could never figure out what was wrong and called it IBS. Sometime right around when I got sick I began developing a weird purply pink skin discoloration on my right arm. It progressed into what it is now, a beige but shiny white thickening that has spread almost from wrist to elbow.

It is beginning to restrict my movement of that arm and there is a dull discomfort. Not sure I would call it pain but the skin feels very right and when you touch it it is quite thick compared to my normal skin.

I am in a province where I have I wait up to six months to see my rheumatologist.. I am considering moving to the next province over as the care is better.

I also have difficulty swallowing but it's not constant. I have loose teeth. GERD. Heartburn that is not burny but feels like a pressure. I was reading about scleroderma and a light bulb went off. I haven't found any pictures online until now that look like what I have.

Anyways. I suppose I'm just looking for support. Thank you for having me. I am a 28 year old female.



#2 Joelf

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Posted 14 July 2015 - 08:41 AM

Hi Pinchy,

 

Welcome to these forums!

 

I'm sorry to hear that you are suffering with Rheumatoid Arthritis (RA) and are experiencing other worrying symptoms.

 

It's possible that these symptoms could relate to Scleroderma, but equally possible that they could be caused by many other health problems. I've included a link to our medical pages on Reflux, Heartburn and GERD and also Irritable Bowel Syndrome which I hope you'll find helpful and informative.

 

As you're already suffering with RA, I would suggest that you explain your symptoms to your rheumatologist at your next appointment. Unfortunately, Scleroderma is a very difficult disease to diagnose, due to it's many little idiosyncrasies and it may be necessary for your rheumatologist to refer you to a Scleroderma specialist, if he does not have the knowledge and expertise to deal with such a complex disease.

 

The good news is that you have come to the right place for help and information, as we have extensive up to date knowledge on our site and a wealth of support from our members. Please do keep posting with any concerns you have and we will do our best to help and advise you.

 

Kind regards,


Jo Frowde
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International Scleroderma Network (ISN)


#3 Amanda Thorpe

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Posted 20 July 2015 - 11:45 AM

Hello Pinchy

 

Welcome! I just wanted to welcome you but can't really add much to what Jo has already said. Have a look around the site because most everything you want to know about scleroderma you will find here.

 

Take care and keep posting.


Amanda Thorpe
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#4 Shelley Ensz

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Posted 22 July 2015 - 06:26 AM

Hi Pinchy,

 

Welcome to Sclero Forums!  I'm sorry you have rheumatoid arthritis, plus concerns about scleroderma.

 

One very interesting thing about your description is that it sounds far more like morphea than any other form of scleroderma, Although I am not a doctor, I say that because you describe skin coloring changes (which do not occur in systemic) and it is only on one side (whereas systemic occurs symmetrically, meaning that the involvement is basically matching on both sides).

 

I'd recommend that you consult a board certified dermatologist who is interested in treating skin diseases (as opposed to one that specializes in cosmetic enhancements, for example.) They should be able to diagnose your skin condition and review your treatment options. 

 

Please keep in mind that there are over 3,000 skin diseases and your particular symptoms might match dozens of them.  Also morphea is quite treatable, particularly with UVA1 phototherapy, which might well be available in your province. Also morphea is the type of scleroderma that affects primarily the skin, and it is never fatal, like some of the other variations of scleroderma.

 

Please set up a dermatologist appointment at your earliest opportunity, and let us know how it goes, okay? 

 

:hug-group:


Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#5 Ron

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Posted 22 July 2015 - 03:07 PM

Pinchy, what province are you in?