I'm scheduled for tomorrow at Addenbrookes for a confirmation of CSS. Does anybody know what happens there,might I be admitted on the spot?

since my GP raised the suspicion of CSS 3 weeks ago I have felt worse and worse with pain,tingling and a burning sensation in my limbs and now frozen fingers and toes and also malaise, joint and muscle pain.I can't tolerate cold any longer.what is this?

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  • Hi goran,

    I have had CSS since 2008. I can't say if they will keep you in hospital; it would be dependant on what the consultant thinks. To be honest it's great news that your GP has cottoned on to it, believe me, THAT is a huge step forward.. Thank your lucky stars for that. I was on the verge of passing away before anyone sussed out what was wrong with me.

    Don't feel as if you're alone; you're not. There are plenty of people on here who have this particular kind of Vasculitis. Although what I will say is, our symptoms may not all be the same. If you want any further help or just to have a chat, I'd be happy to help. :-)

    Good luck!

  • hi BB,

    actually I suggested him I might have had CSS after extensive reading from various sources.that was back in october last year and only 3weeks ago did I succeed in obtaining a referral,that was after a change in the clinical picture.thanx for your support,I am scared and don't really know what lies ahead.any help is more than welcome. G

  • That's exactly why forums like this and the Vasculitis UK website are SO vital. When I was diagnosed there was next to no info available out there. When I was searching for information about my symptoms, on the Internet, I actually thought I had cancer, as there wasn't much about Vasculitis back then. I was sent home from hospital with a printed, one sided, A4 sheet from an arthritis website. Things have changed so much, even in 5 years.

    Being scared is perfectly normal, as you say, you don't know what lies ahead. But at least you are now "in the system" and on the road to getting the help you need.

    When you go for your consultation, be armed with all the questions you may want to ask and if possible take someone with you as all the info you will receive might be too much to take in. I take my husband with me! He remembers things I don't!

    Feel free to ask me as much as you want about CSS.

  • Hi Goran,

    I have a similar type of vasculitis called Microscopic polyangiitis (MPA). I had an appointment with a renal consultant (after spending a fruitless week in my local hospital) because my kidneys were failing. I was admitted to hospital straight away and was formally diagnosed the next day. I understand sometime the kidneys as well as the lungs can be affected with CSS but your consultant will no doubt make a judgment on how badly you are currently affected. The important things that you have been diagnosed (almost) and the sooner treatment can begin the better. This disease is very treatable. Good luck

    Chris

  • HI Goran

    I have Cryoglobulemic Vasculitis and am just waiting for a drug called Rituximab'' to be approved and funded for my treatment. The cold affects me too . I know what you are going thru...The pains and tingling and burning .in your feet and hands and muscles is nerves.....,its called ''Peripheal Neuropathy'' Try heating pads and wear extra socks.and mitts.and stay out of the cold if you can. Even air conditioning can affect you!.. so try keep warm!!! .Like others have said you are lucky to be being diagnosed so quickly! It took me 16 years . . Good Luck !!

    Katherine

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