General Chat

I've never heard of this condition, but I bet if you google there will be a support group. Keep positive, glad to hear that your specialist sounds so good. nell

((()))

Glad you let us know, keep positive, lots of love to you.... Barbara..xx

hope all goes really well for you pauline love lorraine xx

Look after yourself paulinexxx

Hi All Firstly, thanks to all who put messages of support on the board. They were much appreciated I can assure you. I was really tweeked up this morning driving down,but kept thinking of all you good people and the thoughts and prayers coming my way. Anyway, down to the results. I now have a diagnosis - it's one of the Myleoproliferative Disorders called Essential Thrombocythaemia. (if you can pronounce that lot you're better than me!!) The tests that were carried out before we went away on holiday was a plasma study, and that was all normal. I had a blood count done today, and there was no change in that from my last appointment, so although abnormal, is good that there has been no deteriation. I have been extremely concerned about my ears and throat while we were away as I had a lot of pain, and lumps developing on my tongue as well. On investigation, the specialist informed me that I have raging tonsilitis! Antibiotics prescribed for that, so hope to feel a bit better on that front in a few days :-) Going back to the 'condition', it is basically the bone marrow gone mad and producing too much platelets and white cells. It is not cancer or leukemia, but there is no cure for the condition. However, I have been given tablets called Hydroxurea which is a mild form of chemotherapy which is designed to supress the action of the bone marrow. One side effect of these tablets is that they can cause gout, so I also have anti gout tablets to take. I also have to take a low dose of aspirin everyday as there is a distinct possibility that I could suffer from thrombosis. Both my parents and brother died from that, so it seems to run in the family. Long term prognosois - he seems to think that an average time scale before things become life threatening is 5 years,but as every case is individual, it could be shorter than that, or longer. Careful monitoring as we go along will be called for. I have to go back on 19th July for my next appointment to see how things are settling down. I have to say that the National Health system comes in for some bashing,but I can only praise this specialist. He had all the time in the world for me, and pout my mind at rest over a few things which I was concerned about. He has introduced me to 'Chrissie' who is the counsellor, and she is lovely. Between her, my family, friends and the support of you lovely people, I am sure to be kept on the positive track. If anybody knows or has experience of this condition, I wouldlove to hear from you. Enough rambling for now. Will keep you all informed as to my progress. PP (who is feeling much more positive than she was this morning!)

and another :-))

quick nudge while we wait...

Details coming - quite a bit to write, so please be patient. PP