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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 Tina

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Posted 22 November 2009 - 06:02 AM

Hi, just to say I have been lurking on this forum for the last few months since I was diagnosed with limited scleroderma. My rheumatologist said I was a textbook case with everything! I have probably had this for around 15 years or more - I had my first calcified 'cyst' removed then and even though I have severe Raynaud's no one made the link. I actually asked to be referred as my symptoms have accelerated since breaking my wrist last November. I live in the North East of England and intend to post on the UK forum once I am allowed to do so.

My motto is remain positive, it may never happen.

#2 Jeannie McClelland

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Posted 22 November 2009 - 06:14 AM

Hi Tina,

I'm glad you've stopped lurking. Welcome to the Forums. I'm not going to say I'm sorry you have been diagnosed with limited scleroderma, I'm going to say congratulations on getting a diagnosis and being able to plan treatment at last.
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You will soon be able to post on the UK Forum and enjoy all the other priviledges of a full-fledged member. And in the meantime, I'm sure our UK members will come here to welcome you. Hmmm, we've got to find a place in here to set up the punch bowl and some goodies. Posted Image

So welcome once again and happy posting!
Jeannie McClelland
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#3 Tina

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Posted 22 November 2009 - 06:26 AM

Thanks Jeannie - I am quite happy to be diagnosed at least now I can put a name to my ailments and not have a random variety of things that are wrong with me.

#4 Amanda Thorpe

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Posted 22 November 2009 - 06:28 AM

Hello Tina

Welcome to the forum, you're in the best place for all things sclero!

As Jeannie has already explained you'll soon be able to post away in the UK forum and we'll be glad to have you do so.

Unfortunately diagnosing scleroderma, as you know, can take a long time because it needs a doctor who adds up apparantly random symptoms to the sum total of scleroderma. At least now you have a bona fide diagnosis which will hopefully be followed with a treatment regime based on your symptoms.

Take care and keep posting. :bye:
Amanda Thorpe
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#5 Shelley Ensz

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Posted 22 November 2009 - 06:41 AM

Welcome to Sclero Forums, Tina! I'm delighted you've stopped lurking. What is your favorite tip for dealing with Raynaud's?
Warm Hugs,

Shelley Ensz
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#6 Joelf

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Posted 22 November 2009 - 07:13 AM

Hi Tina

A warm welcome to you from another UK member; :bye: I live rather a long way from you in the South East of England and I have Systemic Limited Scleroderma unfortunately with lung involvement, although in my case thankfully it didn't take them 15 years to diagnose it! ;)

I'm looking forward to hearing more from you. Now where's that punchbowl you were talking about, Jeannie? ;) :lol:

Kind regards x

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#7 Tina

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Posted 23 November 2009 - 01:08 AM

Hi Joelf - I also think I have lung involvement as my last tests showed I only operate at 56%, it is now causing me problems but I also think if I don't 'push it' it will only get worse - so I do push myself as hard as I can. The doctors are considering sending me to the local specialist unit.

#8 Tina

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Posted 23 November 2009 - 01:11 AM

Hi Shelley - no real tips regarding Raynaud's except to keep warm. I have a wonderful husband who does the freezer run and any outside things for me. I also recommend a parafin wax bath, which I use every day for my hands. It helps keep the skin soft and my cuticles as soft as I can possibly manage - I have a lot of problems with them.

#9 Shelley Ensz

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Posted 23 November 2009 - 04:21 AM

Hi Tina,

You've graduated from the Welcome forum now, so this thread is being moved into the U.K. subforum.

Congratulations and welcome as a new full-fledged member! :flowers:
Warm Hugs,

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

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

#10 Deb1million

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Posted 25 November 2009 - 11:55 AM

Hi Tina,

Glad you have joined us.

Where are you in the north east? My husbands family are from north east Lincolnshire. I know how much colder it is up there, compared to here in the south east. I have to take extra warm clothing when we drive up to see them.

:flowers:
Keep warm,

Debbie

#11 Tina

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Posted 25 November 2009 - 10:59 PM

Hi Debbie

A lot further north than north Lincolnshire - I'm in County Durham. It's very cold today, I might not be able to walk the dog, I try to do this to keep my lungs moving.

Tina