Finally going to get some sense - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Finally going to get some sense

TJme profile image
TJme
4 Replies

After a really bad flare up I saw my GP who sent Urgent referrals to the Rheumy and Podiatry 5 weeks later I have my Podiatry appointment through for next Wednesday .

I have read a lot of people mentioning Professor Denton of the Royal Free so was amazed this afternoon when I got a telephone call from my hospital Rheumatology Dept telling me that as an urgent referral I was getting an emergency appointment with Professor Denton at my local hospital this Friday ! Apparently he consults there twice a year and they think my case warrants his attention ...anything has to be better than my current rheumy who took one look at me said " yes you have Raynauds ,  here's a leaflet  goodbye "

Hoping that I will get some more information about my condition because despite meds its getting worse , I don't have attacks in the normal sense of the word  Mine don't last a few hours they literally last for 7 months . The pics are my hands the day I went to see my GP

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TJme
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4 Replies
kel55 profile image
kel55

Hi, this type of thing really annoys me! not you but the way it is treated and how it is treated.

These so called health professionals live so far in the past its untrue and really shows how poor their followup or continuing knowledge update is! 

Raynauds Is the spasming of the microvascular system in the skin! Not to be confussed with muscle twitching, it is when the vascular system pinches and stops blood flow to everything down stream. Im no doctor but that looks like an ischemic rash, caused by lack of oxygen rich blood to that area. normal treatmeant at the moment is from: nitrates, Calcium Channel Blockers and nitrate cream. i use a cream call dactacourt, quite good (i bet that itches). you need to see a vascular specialist not an auto imune specialist!

I keep writing about this and many now have checked it out and realise how poorly theyve been treated

This RSUK needs to do more to seperate it away from an autoimune issue but for some reason they dont want to??? Very Poor Show!

talk to your pharmasist because it sounds as if your doctors not the one to ask about vascular dilators and constrictors and NO its got nothing to do with your diet unless you have a vascular blockage, 

i wish this society would come on and argue it out but guess what they cannot otherwise theyed be lying to everyone!

sorry but its annoying - you dont go to the butchers to post a letter, so why go.......

newbe profile image
newbe

I go to the Royal Free twice a year. Professor Denton is brilliant, can't fault the treatment I received there they managed to track my specific antibody with my connective tissue disease. Good luck I am sure you will get some answers.

Debbie

GlasgowHen profile image
GlasgowHen

Let us know how you get on

TJme profile image
TJme in reply toGlasgowHen

Will do :D I'm off in five minutes  will take everything in and reply when I get home x

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