[Kitty]

Hi Marcus,

I was just diagnosed this past June with MDS and I felt I had been given a death sentence! I was in shock and didn't know what to do. At first I didn't tell my family, but after doing lots of research online and finding this site, I went ahead and told them. They have all been very supportive and I have someone to talk to on the days I breakdown. (Less and less now.)

Now I found a great Hematologist (I dropped the first two because they wouldn't take the time to explain things to me and I just plain didn't like them) and she works together with the people at Stanford Medical Center where I go for consultation and to get ready for a bone marrow transplant when and if needed.

For the symptoms I had, my doctor thinks that I probably had this for the last ten years. I was just used to working with low energy and I didn't go to a doctor for a long time. And now she tells me she believes I have probably another ten. So maybe they caught yours at the very beginning and you have many years ahead of you. And like someone said in one of the messages they are finding new drugs and treatments for MDS they did not have before. So, I imagine that in the next few years they'll come up with better and better ways to deal with this disease.

The first few months after my diagnose were very difficult. That's all I could think about, I was scared and confussed.

Now, six months later, I went back to work and I decided I am going to enjoy every day as they come. I think about the "disease" less and less these days. The trick is to learn to live with it. You are much younger but you might have lots of good years ahead of you.

You'll hear this over and over. Become well informed because there will be decisions you'll have to make. This is a great site for that! There is always someone here that can offer information. So, feel free to ask away!
And "pick" a good doctor and a Center of Excellence. I don't know the ones in the UK but I am sure someone here will.

Find out your exact diagnose so you start getting more specific information.

Good luck to you and hung in there!

Kitty