Re: UK Specialists - St. ' - Carol

[Guest guest]

Oh Carol you poor thing, that sounds absolutely horrendous, the complete opposite to my experience! The tests for me were merely the ice cube test - to confirm the cold urticaria - and a couple of blood tests. Like you, I was made aware that a cure was unlikely, but there was every chance of controlling the symptoms, which after a life time of suffering from this horrible condition was all I wanted. The medication I'm on, though not perfect, keeps it well under control so that I can now go out in the cold without feeling that everyone is looking at me, and of course the itching is all but gone. If I miss my dose of Telfast though, I'm soon made aware of the fact.

How are you coping now? What medication do you take? and do you get any relief at all?

I can understand your cynicism though after having undergone such an unpleasant experience. Nevertheless, I wouldn't want to put anyone off trying, as it might help them as it did me, and we must get help where we can. Mind you, I live in hope for a cure or a superdrug that will control the symptoms 100% - as I guess we all do!

Hope things improve for you

Best wishes

Jean

UK Specialists - St. '

Hi gang

I must contribute my cynical little two cents worth here..............because if you have just plain old boring chronic idiopathic urticaria, I would not bother travelling all the way to London...........

My experiences at St. ' were disappointing. I got referred there after one year of chronic urticaria and treatment at the Whittington Hospital. At that point they said I had "suffered enough"! Well, nine years later, and I'm still suffering. Initially I was thrilled to be referred to St. ' and I saw Prof. Malcolm Greaves, who has done a lot of research. At my first meeting with him he broke the news that he wasn't going to be able to do anything to cure me, but could only treat the symptoms, and I could participate in research programmes. I had to endure what I describe as "torture" when I was tested there for pressure urticaria/delayed pressure urticaria. (not part of a research programme - just their ordinary tests) They literally screw metal bolts deep against your skin on your thighs and leave you like that for ages and then come and measure the welts. There were several unpleasant and painful tests like this and I had had to come off all medications before these tests were done, so I was covered in hives, swollen, and near suicidal at the end of the day. All this proved what I told them in the first place, that, yes, I do have delayed pressure urticaria.

At the end of the year under Prof Greaves, I was on exactly the same medication as at the start, and in exactly the same position. He told me that I was "managing fine" and they could do nothing more for me. So that was that.

I did enjoy the location of the hospital opposite the Houses of Parliament, etc but although the staff were always patient and sympathetic, I feel it was a complete waste of time!

Sorry to be the "old cynic" AGAIN, love Carol~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~If you do wish to unsubscribe then you can click on the following link: urticaria-unsubscribe ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~This list is in the service of those who suffer from Chronic Urticaria (hives). We strive to support and lift each other as a worldwide cyber-family. We share whatever needs to be shared to help one another in our struggle with Chronic Urticria. Information provided in this forum is not to be taken as medical advice. Always consult your health professional before trying anything new.Any posting that is off the main topic of Chronic Urticaria, we post with a prefix of NCU -. This is done out of respect for those who do not wish to read such postings.