MIS-DIAGNOSIS FOR CFS

[joey954]

I HAVE RECENTLY BEEN DISCHARGED FROM HOSPITAL, BEEN TOLD THAT I HAVE VASCULITIS, FOR THE LAST 2 YEARS I HAVE RUN TO GP'S, CONSULTANTS AND WAS TOLD THAT I HAVE CFS/ME. I BECAME VERY ILL OVER ON HOLIDAYS AND MY LEG STARTED TO SWELL AND A RED PURPLE RASH APPEARED ON MY LEGS AND PAIN. I WAS ATTENDING DERMT. CLINIC AND KEPT TELLING ME IT WAS NOTHING TO WORRY ABOUT, UNTIL I WAS TOOK TO A&E. I AM NOW EXPERIENCING SEVERE PAIN IN MY UPPER BODY, CHEST AND BACK AREA, IS THIS NORMAL, AND STILL EXPERIENCING TEMPERATURES, WHAT CAN I DO, ALSO WHEN RASH DISAPPEARED SMALL RED MARKS STARTED TO APPEAR ON MY LEGS AND LOWER ARMS.

[CathT]

Sorry to hear your news. Have the hospital started you on any treatment yet? They usually start with steroids to dampen things down. Yo could as for a referral to specialist that deals with vasculitis. What part of the country are you in. Cambridge and Birmingham both have vasculitis clinics, not sure of anywhere else.

[joey954 in reply to CathT]

no they have started me only on pain killer, going back to derm. outpatients on thursday, i am from belfast.

[CathT in reply to joey954]

Go with a list of symptoms and questions. If you are not happy ask for a ref somewhere else. Good luck, please let us know what happens.

[Kentish_Man]

Unfortunately Vasculitis is still not very well known among doctors. As Kath says the steroids should help with your symptoms and I am treated at St. Thomas' hospital in London. I am under Professor D'Cruz who is quite an authority on Vasculitis. So, hopefully, you can get yourself referred to a hospital with a good lupus/vasculitis department.

Good luck and feel free to 'air' on here your progress.

[AndrewT]

Dear joey954,

The symptoms that you describe sound like vasculitis, to me,-I too had a rash, for years, and it wasn't until I collapsed that any connection was made! I agree, with everyone above, that yes you need to go on steroids- probably quite a high dose, to begin with (20mg+), this will be reduced, as you 'improve'. They will, after a time, find you a 'maintenance dose'- the lowest amount that you can have and still keep you 'well'.

Which hospital(s) are you under? Do they have experience of vasculitis, not all do apparently! If you are anywhere near the South East, try to get referred to Addenbrooke's (Cambridge). I have just had a kidney transplant there- six, or seven, weeks ago- it seems to be doing fine!

I hope that you 'get on' OK and I give you my best wishes.

AndrewT

[joey954]

Hello,

Thanks for the feedback, just really frustated at the moment, i live in belfast, and health service here really dont want to help,

joey

[CathT in reply to joey954]

Have you checked out vasculitis-ia.org/useful-li... They list specialist in Northern Ireland.