hi

[Anne G]

My name is Anne and I have been diagnosed as having RCMD June 2005. My white cells are the cells which are mainly affected(anc 0.2). I am 42 years old, I have a 15yr old Son called Chris and I live with my mother in Scotland. Both my siblings have been tested and are not a match for me.

In Scotland it is very difficult to find any information. I cannot find any books on MDS anywhere in the book shops. I have also tried different local libraries and they do not have any either. They advised that it I can source an isbn number of the indepth books I require they will source them for me. I previously contacted aa & Mds website and they sent me really useful inofrmation.

I have now recently found a GP who actually knows what MDS is. At my previous GP practice I found that I had to teach them. (Although, I do have a really good Haematology Consultant at the hospital).

This forum and all the posting hold a wealth of knowledge and experience and for that I am thankful.

Anne

[Neil Cuadra]

Anne,

Although there may be medical books that mention MDS in passing, I'd be very surprised if any of us found books with current information about treatment of MDS. Still, books can give us background about how bone marrow and blood cells work.

While researching treatment choices, my wife and I did manage to find some printed journal articles with descriptions of studies, but that was in a medical library at a treatment center, where there were doctors who could tell us more about current MDS treatment than the printed materials.

It's important to get information that's current. Treatment reports and studies from only a few years ago may not reflect the state of the art. That's why we ended up seeking information online, from the AA&MDSIF, and from doctors at the four hospitals we went to for consultation or treatment. Trips to the library didn't gain us much.

[Zoe's Life]

Anne,

Welcome. I found a great deal of info on ask.com and google search engines. I did find a book I liked on Amazon.com. It was edited by Greenberg, called simply "Myelodysplatic Syndromes." It was published in 2006. While new research is conducted daily with new findings, it was a helpful book for me. Internet research has been my greatest source of info however.

Zoe

[Anne G]

Thank you for your replies. I was a nurse for 15years(district nurse for 10) and although I had came across AML I have never came across MDS. I am finding it very difficult to believe that their is not very much literature on this. I have spoke to a couple of friends who are GPs' and they do not have any great knowledge. They did suggests few sites, however they are subscription sites to bigger institutions. Because there is no literature(other than cell structure)when I was recently diagnosed as having a Hypothyroid the I did not think there was a connection to Mds. However, I found the answer by accident when I was researching the web. I further had it confirm when speaking to the consultant, that Mds affects the pituitary gland - in turn effects the thyroid gland. This they cannot treat, as the treatment would lower my ANC count even futher than it already is. It would have been nice to read something, which could give a possible "heads up approach" to other parts of the body which may be effected. Zoe I will get the book you suggested on Amazon today.

Thanks

Anne

[Kevin R B]

Hi Anne and thanks for the tip on using corsodyl mouth wash. I will see what the pharmacy has tomorrow when I visit the clinic for my "vampire" session.

I am surpirsed to read your report that there isn't too much knowledge of MDS amoungst the Scottish medical fraternity, after all Edinburgh contributed so much to medicine in the 1900's. Are you being treated by the NHS?

Keep up your reasearch and please update your post as to any positive findings.

Are you receiving transfusions as an out patient? I would be interested to know how long it takes you to work through the system in Scotland for a unit of blood. Here in South Africa if I get to the hospital clinic at 7am I am lucky to leave at 5pm - my last visit involved endless queing and I had to return the following day in order to receive a second unit. I am learning to be a very patient person - no pun intended!

Stay positive.
Regards
Kevin