Erythromelalgia getting worse - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)
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Erythromelalgia getting worse

skylark15
skylark15

Hi, community.

In response to Coco's post with the new TEA Guidelines, I said I had an appointment to see an NHS consultant in London. Professor Chris Denton has a special interest in Scleroderma, Raynaud's and associated connective tissue disorders and I'm pretty sure it is the same Prof Denton as mentioned in another reply to Coco. I'm really hoping that he can advise me and my GP on systematic step-up treatment that might prevent the nightly awakenings with my feet on fire. I loved the description of feeling as if one is on fire from inside, also in the replies to Coco. That's just what it feels like.

My appointment is on 19th December and I'd like to prepare an up-to date summary of my medical history, symptoms and meds taken, to take with me. It would need to be as brief as anything associated with the multiple manifestations of autoimmune conditions can be (!)

I'd appreciate any tips from those who have made a summary like this to take with them to a first appointment. Thanks.

4 Replies
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Your GP should be able to give you this but Professor Denton will have all your notes and blood tests already. I went to see him in 2011 and he is the best doctor in the UK for Scleroderma. He is on a team of specialists researching into Scleroderma.

You will also have blood tests when you are there and any other tests that he thinks are necessary. You will speak to a specialist nurse who will give you information and when I was there, there was a range of creams for skin on a table as free samples for patients.

Another tip is to write a list of all the things you want to ask him. It is so easy to forget what you want to say on the day. I had a list and he covered everything on my list before I had a chance to look at it to check what else I wanted to ask.

You can go to see him with full confidence. Remember to take a list of all the medicines you are taking and you can be sure you are seeing the best doctor. He is very kind and friendly and will make you feel at ease.

Good luck.

skylark15
skylark15
in reply to Irene55

Thanks, Irene55, this is immensely helpful and very reassuring, especially about Prof Denton. I was referred to him by my rheumatologist: I'm not sure whether she'll have sent anything other than the simple referral letter: I only see her annually, for a review because apart from cutaneous symptoms, my lupus is quiet. It is the evil twins of RP & EM that are the most troublesome and I've been managing those alone, with help from a podiatrist in wintertime.

I will make sure that I have various print out of my recent blood tests and will take a list of my meds,. well as the notes that forum members on Lupus UK have suggested. Thanks again. I'll keep you posted.

Tess

Irene55
Irene55
in reply to skylark15

Nowadays all medical records are online and doctors can easily access all your records. He will just have to bring this up on the screen and see everything about your treatment. Internet is one of the best inventions for a long time as long as it is used in the right way. But take as much information as you can, it is always useful to have something written down as well.

skylark15
skylark15
in reply to Irene55

Yeeessss, I do agree about the internet generally but when the national "spine" of all GP, hospital & patient info was first proposed, I, along with many of my colleagues opted not to be on that central, easily accessible data base. It was, even back then, just too easily accessible to commercial organisations. That sort of data is absolute gold dust for insurance companies and financial institutions. However, since NOT being on it has caused me some problems with shared care recently, I am re-thinking and may allow my details to be shown. Thanks for your help, Irene55.

Tess

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