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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 trishtrub

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Posted 04 August 2009 - 01:40 AM

Hi Everyone


I have been away to France for a wonderful Sunny week. Where to be honest I did nothing except for rest,while my children played on the beach, eat and sight see. The Normandy beaches are fantastic, lots to see and do. I also noticed I had very little pain, the only thing that stopped me walking very much was lower back pain!

Since coming back I have been doing the washing and sorting and climbing up and down stairs, I am now shattered and yes the pains are back!

Any way, Something else is happening now, I am clicking! Mainly my fingers of my right hand but also elbows and knees. Can you tell me, is this normal!

I also had a barium swallow and a heart scan yesterday, I was told at both that results will be sent to my consultant but nothing to worry about, sounded good to me. Other than these and blood tests I have only been given a chest xray, shouldn't I have a lung function test. I wish someone at the hospital would sit with me and talk about everything, all I get is comments about something being a little high but normal with my condition! Thank goodness for this forum its the only way I find anything out!

I am seeing the sister from Rheumatology department about how to deal with raynaud's on Wednesday, if anyone can advise on any questions to ask I'd appreciate it. I've also got to see Occupational health Thursday, the same doctor that said he can't see much wrong with me!

Don't I go on, brush everything I'm worrying about under the carpet until I start writing on here!

Hope your all keeping well, fingers crossed for some good weather, (although not for Amanda and the hotties if it makes them poorly!!).

Trish x

#2 Amanda Thorpe

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Posted 04 August 2009 - 10:59 AM

Hello Trish

The good news is you're perfectly normal, for a sclerodermian that is! Joint clicking/cracking is a scleroderma symptom and my joints, particulalry the knees have been cracking for years. There is an actual medical name for it but I don't remember what it is...they say sclero does not effect the brain...they lie! :lol:

It is difficult when you are getting little bits of information here and there, can you make an appointment with the rheumatologist so you can ask all your questions including what about my lung function test? Getting answers to questions is, in my mind, a legitimate reason for an appointment. Alternatively telephone the secretary and ask for the rheumatologist to phone you to answer your questions, if they agree be prepared to wait.

When you see the nurse she may be able to shed some light on some of your questions, the rheumatology nurses at the hospital I am under are superb and can access my file to answer my questions. Write your questions down and ask if the nurse you see can look at your notes to clarify any of your other questions, it can't hurt to ask.

You absolutely have to tell all after you see the occupational health person! This time you are prepared, you have a legitimate disease and it's friends (raynaud's) and you aren't going to be messed with. Do ask them their experience of scleroderma as in how many people have they seen with it and what can they tell you about it?

I am so glad you had time away with the family and that the scleroderma took a back seat for once, very good of it.

Keep us informed and keep posting your questions.

Take care.
Amanda Thorpe
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#3 trishtrub

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Posted 04 August 2009 - 07:11 PM

Hi Amanda

Thank for your reply, you're a star and I hope you know. I, for one, am very grateful for the time you spend replying to us and supporting other Sclero sufferers.

Today's Rheumatology nurse day so I will ask lots of questions,

Bye for now x

#4 Amanda Thorpe

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Posted 05 August 2009 - 08:42 AM

Hello Trish

It's an absolute joy being involved with the people on this forum and the main one. Do let us know how it went with the nurse.

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)