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Biomarker for Diffuse Scleroderma skin has been discovered!


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Do I have Sclero?

sclero Raynauds syndrome

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#1 sirenadabat

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Posted 25 April 2014 - 10:30 AM

Hi everyone:

 

I'm so glad I found this site.

 

A year ago (after my daughter got married in FL) I came back and had a kidney infection.  It's been a year and my platelet levels have been hovering around 500-510.  I've had infection after infection (UTI, Kidney, E. coli, Ear infection, etc.  My doctor referred me to hematologist who said although platelets were a bit high it was nothing to warrant a bunch of tests.  He said to keep him informed if I get another infection.  (Which I did three weeks later.)

 

A few months ago I developed a patch of red bumps on my forearms that turned brown.  I thought it was because of doing dishes in hot water.  (I also have chemical sensitivity).   

 

Back in December I noticed my thumb and index finger on right hand would turn blue occasionally. Then my little toe on right foot.  I went to the doctor last month and she said it looks like Raynaud's syndrome.  It is now affecting both feet and sometimes my left hand where the whole palm and tips of fingers turn blue.  She gave me high blood pressure medication but it makes my hands swell.

 

My question is: Could it be that I have scleroderma?  Oh and back in November my facialist said I had a bit of roseacea which I had never had before and about a month ago I developed a dark patch on my cheek that I thought was a bruise.

 

Is there a specific test I can ask my doctor to give me to confirm if I have sclero?

 

Thank you for any help.



#2 Shelley Ensz

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Posted 25 April 2014 - 06:14 PM

Hi Sirena,

 

Welcome to Sclero Forums.  I'm sorry you have some health issues along with concerns about possible scleroderma. 

 

One thing that may help going forward is to understand the differences between localized scleroderma, which affects only the skin, causing either discolored or indented plaques, and systemic scleroderma, which can affect any part of the body, and is sometimes the cause of Raynaud's, but that can harden the skin but not cause color changes.

 

None of us are doctors, so of course, we certainly can't diagnose you.  But we can provide a lot of info so you can see whether you should continue to pursue this idea, or not.  You may want to look at a systemic scleroderma symptom checklist, which is in our printable brochure.  Scleroderma is a complex diagnosis based primarily on a constellation of clinical symptoms. 

 

I need to run right now, but I am sure others will pitch in with more ideas.

 

:emoticons-group-hug:


Warm Hugs,

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

#3 Kathy D

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Posted 25 April 2014 - 08:36 PM

Nice to meet you Siren,

 

I wanted to let you know my mother in law has idiopathic Raynaud's, she is quite healthy and in good health with out any disease.  I hope that comforts you.  I heard Raynaud's can appear all by itself, not necessary along with rheumatic diseases.   Keep your hands and feet warm either way.

 

My primary care doctor diagnosed me with a rheumatic disease and tested my blood for it.  When it returned positive I was referred to a rheumatologist that diagnosed me.

 

Wow Shelley, what a great brochure!  I especially like the language, its so easy to understand without having to google scientific medical terminology :)  So Siren, take a good look at the link Shelley posted for you, I wish I had seen it when I began my journey.

 

Please keep me posted!

 

KD


Diffuse Scleroderma Diagnosed March 2009

#4 Joelf

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Posted 26 April 2014 - 02:53 AM

Hi Sirena,

 

Welcome to these forums!

 

I'm sorry to hear that you've been having constant infections and worrying symptoms. As Kathy has mentioned in her post, it's perfectly possible to have primary Raynaud's for many years, without developing Scleroderma, although Raynaud's is a very common occurrence in the disease. Unfortunately Scleroderma is a very difficult disease to diagnose, not least because it presents itself in so many different ways and affects everyone to a different degree. Shelley's link to our symptom checklist is a great source of information to help you, as are our medical pages.

 

Should you decide to investigate your symptoms more thoroughly, then your doctor will probably do more blood tests and depending on the results perhaps suggest a referral to a rheumatologist. At that stage, we do recommend that, if possible, you consult a Scleroderma specialist as sadly many rheumatologists do not have the expertise and knowledge to deal with this complex disease.

 

Please do keep posting and update us on how you're faring.

 

Kind regards,


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#5 Amanda Thorpe

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Posted 30 April 2014 - 03:42 PM

Hello Siren

 

Welcome to the forums, you can also see the list of symptoms in the video symptoms of scleroderma and you may also find helpful diagnosis of scleroderma and difficult diagnosis of scleroderma videos.

 

Do bear in mind that it can take on average 6 years for a woman to achieve a scleroderma diagnosis and 3 years for men.
 

Take care and keep posting.


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#6 sirenadabat

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Posted 07 May 2014 - 02:50 PM

Hi!
 

Thanks for all the replies.

 

I spoke with my doctor after my last blood test. Platelets still high and she said I tested positive for autoimmune disorder although she didn't run all the panels.  I am negative for lupus.  She suggested I see a dermatologist for my skin conditions.

 

I forgot to mention I am having joint pain in hands and in feet as well.  I tried searching for a sclero specialist in Georgia (USA) but haven't found one.  Although I have insurance there is a 6300 deductible so I have to pay out of pocket until I reach that amount.

 

Where I was only *smurfing* once or twice a week it is now happening several times a day.

 

Thanks again for all the replies.  I'm going to check out the link again.



#7 Amanda Thorpe

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Posted 13 May 2014 - 01:04 PM

Hello Sirenadabat

 

There are scleroderma experts around you but as you say not in your state. You know, the most certain way to get a diagnosis/get the all clear is to see an expert. I don't know if you can pay for this out of pocket, I am in the UK so not up on insurance etc.

 

Take care.


Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
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International Scleroderma Network (ISN)