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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 Bobby Dazzler

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Posted 26 September 2009 - 12:39 AM

Hi Everyone, as it says in title I travelled all the way to London from Scotland for my first appointment at the Royal Free Hospital on Thursday and although very tiring what a beneficial journey it was.

First of all can I put anyones mind at ease travelling from Scotland, I travelled by train to kings cross then got the bus (number 46) right outside of station that then stopped at the Royal Free (perfect !!).

I First saw Mrs rheumatologist who took all my details and gave me an examination and gave me assurance that although I have my condition that I am not alone and that they were now going to help me. Prof. Denton rheumatologist also examined me and confirmed that although I thought that my symptoms had only been for six months he was confident that I had scleroderma for at least a couple of years as things seem to have settled as skin has softened from previous report from Edinburgh hospital.

My mobility is still very poor as my joints are very stiff and sore and I have to see a lung specialist in Edinburgh in a few weeks. I also have to have a colonoscopy as I am having bowel involvement.

The medication that Prof D decided on was MMF and Steroids and depending on lung involvement they will review this, so here goes with the next stage of my long journey with scleroderma.

After the examination I spoke to the specialist nurse who was great, she gave me so much information and guidelines on how to cope with the illness and she also gave me contact telephone that I can call at anytime.
Overall I am very pleased that I was referred to the Royal Free and although I am unlucky to have the illness I am lucky to have such an expert team working with me now.

#2 Joelf

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Posted 26 September 2009 - 04:54 AM

Hi Bobby

I'm so glad to read your post and hear that you had such a satisfactory consultation with Prof. Denton and his team.

I too was very impressed with the whole set-up at The Royal Free and also in my case The Royal Brompton Hospitals; at least we can feel that we have received the best possible treatment. :D Hopefully the steroids will improve your aching joints; they certainly did with mine.........I haven't looked back since I started taking them!! ;)

Good luck to you on the next stage of your treatment. :)

Kind regards. x

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#3 Amanda Thorpe

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Posted 26 September 2009 - 07:08 AM

Hello Bobby

I am glad you finally had your appointment and that it was so successful. As a fellow patient at the Royal Free I know how excellent the rheumatologists are, particularly Prof rheumatologist & Mrs rheumatologist and the specialist nurses. You really can ring them about anything sclero and they always take time with you on the phone.

I hope the mycophenolate mofitel (MMF) is a success for you and that you feel and improvement soon. At least you can now relax in the knowledge that you're being treated by the best.

Take care.
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#4 Buttons

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Posted 28 September 2009 - 03:36 AM

Bobby what a positive appointment you have had, it certainly makes a difference knowing that you have someone working with you!
I just my rheumatologist was like that he puts my aches & pains in my joints down to the Raynaud's even though it was him who diagnosed Limited Systemic Sclerosis. My hand are swollen & belwo the nailbeds they are very shiny - looks as if they've been polished, in the mornings I find I'm very clumsy handing small things like trying to get my tablets out of those blister packs. I know from someone who I met with Lupus who was under him she told me he always sits on the fence & in her case it caused too much damage to her lungs! She now sees someone at the Royal Free who has helped her tremendously but was still told she only had about 10 years to live even though she was only 25!

Take Care

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