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#1 allyrob

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Posted 14 March 2012 - 08:44 AM

A few years ago I started losing the colour in my fingers and would get numbness in my hands and feet, my doctors told me it was due to smoking so I quit, I then started to have trouble getting out of bed and if I had sat for a while it hurt to get up, so I had a blood test done and a rheumatologist said I have Crest. They said I would need all these different tests done, unfortunately for me I think I was sent to the wrong rheumatologist as so far I still have not been properly diagnosed since my first appointment in February 2011 and had to keep ringing up to arrange some tests myself.

My doctor has since referred me to a different rheumatologist but I was wondering if anyone knows of a specialist in the NorthEast as I live in Durham.

I am also wondering if I am the only one who is not losing weight as I did put some on when I stopped smoking but then with the steroids I put more on and so far haven't lost any at all.

#2 Joelf

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Posted 14 March 2012 - 02:42 PM

Hi Allyrob,

Welcome to these forums!

Unfortunately a diagnosis for Scleroderma can take a long time (I believe the average time is 6 years). One of the reasons that it is such a difficult disease to diagnose is that it presents itself in so many different ways and I'm afraid that many rheumatologists do not have the expertise to deal with this complex and unusual disease.

I've included a list of recommended Scleroderma specialists to enable you to find one in your area as you requested. I've also included a link to Limited Scleroderma (aka CREST) to give you some more information which I hope you'll find helpful.

As to your problem with weight gain, I'm afraid one of the side effects of Steroids is weight gain (and don't I know it!! ;) ) They should always be prescribed with caution for Scleroderma patients as they can sometimes precipitate a renal crisis.

Now that you've found our forums and joined our community I do hope you will continue posting and let us know how you're faring.

Kind regards,

Jo Frowde
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#3 allyrob

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Posted 14 March 2012 - 03:26 PM

Thank you, I am still trying to find out information and its daunting I am so pleased to find these forums x

#4 Amanda Thorpe

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Posted 14 March 2012 - 03:46 PM

Hello Allyrob

Get yourself under the care of scleroderma expert for starters, however far you have to travel to get there. You need to be under someone who knows scleroderma, how it can progress, how to treat it and how not to treat it.

The good news for you is that limited scleroderma (previously known as CREST) progresses slowly with a more favourable outcome, have a look at our video about limited scleroderma.

Congratulations on giving up smoking as that is something you do not want to be doing if you have scleroderma for sure.

Take care.
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#5 allyrob

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Posted 14 March 2012 - 03:57 PM

Thankyou Amanda, I will look at all the links because my rheumatologist has not really told me anything. I have learnt more today than I have in the last year .

#6 Lil Dee

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Posted 16 March 2012 - 02:59 PM

Hi there Allyrob,

Welcome to the best place for understanding support and lots and lots of information about this very complex and confusing condition.

I do think that asking to be referred to a Scleroderma specialist really is the best thing you can do. I have been seeing a Rhuemotologist for about three years now, and I have just gotten to the point where I was going to ask for the referral to a specialist.....I think we were on the same wave length as my rheumatologist has also decided to refer me to a specialist when I went to see him this week.

I came to the conclusion that I needed to see a Scleroderma specialist when I was admitted to hospital recently (due to a Raynauds issue that required an Iloprost infusion for 5 days) and spoke to a lady who had a special interest in Systemic Sclerosis. I learnt more from her in ten minutes, than I have from my rheumatologist doctor in the three years he's been treating me. :rolleyes:

Please do not hesitate to ask questions about anything, there are so many people that hang around here, someone will be able to give you some kind of answer/information to help you.

I find it quite comforting to come here, and speak to people who know what I'm going through.....there's not many in the real world that do ! And we all love a hug from time to time :emoticon-hug: