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This topic has 5 replies, 1 voice, and was last updated 17 years, 3 months ago by Neil.

Viewing 6 posts - 1 through 6 (of 6 total)

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January 24, 2007 at 4:00 pm #16876

Anne G
Member

I am new to the forum and live in Scotland, this is my 2nd post. Although I not new to my diagnosis I feel I would like to learn more. Whilst I have a very good haematologist, my General Practioner has not got a clue when it come to MDS and find I am having to educate her. Finding reading material is limited and very difficult to come by. Is there any reading material I can obtain to keep me up to speed.

January 24, 2007 at 4:28 pm #16877

maueenh
Participant

You can search this site for lots of information as well as contact the Aplastic Anemia & MDS International Foundation who will send you a comprehensive package of information.

Welcome to the forum
Maureen

January 24, 2007 at 4:43 pm #16878

Anne G
Member

Thanks Maureen. I have searched a lot of site for different pieces of information. Some of which I cannot access to because you have to be within the medical profession. I was a nurse for 12 yrs before I changed occupations and did’t know that MDS existed before my diagnosis.

I will contact AA&MDS International. Thanks Again
Regards
Anne

January 24, 2007 at 6:55 pm #16879

SLStrout
Member

The National Marrow Donor Program has a good web site, http://www.marrow.org, in addition to those mentioned above. (Even if you’re not a candidate for a transplant, it’s a good site.) As well, the National Bone Marrow Transplant Link acts as a clearinghouse for lots of good organizations and web sites: http://www.nbmtlink.org. Best of luck.

January 24, 2007 at 9:43 pm #16880

Anne G
Member

Thank you for the above sites. I will investigate Asap. I have been offered BMT for when I start to decline. I have also been told my brother and sister are have had HLA test and are not a match. Currently on no medication except paracetamol for night and day sweats and antibiotic prn. ANC has never been above 0.7 in the last two years. If anyone can suggest any homeopathic, herbal or any other therapies to help reduce sweats. Once again thank you for your help. I have read the forum on this site on and off in the last 2years and I have found this invaluable.

January 24, 2007 at 10:42 pm #16881

Neil
Member

You might wish to have your hemo think about neupogen for the ANC and Procrit for low RBC.
Have you looked at all of the educational info on the home page for this site? Scroll down the links on the left side of the page. There is a huge amount of info. There are several articles on the page itself that change periodically.
There is a newsletter pulished by the MDS Foundation that is available on the net. You can find a few editions off the home page.
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