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Old Tue Mar 13, 2012, 09:50 AM
CatherineJ CatherineJ is offline
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Join Date: Jan 2012
Location: London, United Kingdom
Posts: 29
Hi everyone,

Thank you for your responses and support, it definitely seems like this disease can be volatile, unpredictable, and frustrating.

At first being told there was nothing to be done but watch and wait made me anxious, but I feel a lot calmer now.

I am feeling so much better lately, I even ran 6.5 miles last night! I havent been able to run like that in a year. My Hg is higher than it has been in a year. I don't know why all of a sudden I feel so much better, I was really struggling with fatigue, infections, night sweats over the past six months.

Linda- did you have your children while you had MDS? I have been wondering if I were to get pregnant if it could make the disease progress.

Dick- I think there are many troubling issues with health care in the US. My gp in the US kept telling me it was just stress even though my platelets were in the 80s and 70s. I got to London in October and had my blood checked again, and the gp immediately referred me to a hematologist because having platelets that low for months on end cant be caused by stress.

I have also read that fatigue isn't necessarily in direct relation to blood counts. I thought that was really interesting.

I guess that if I continue to feel pretty normal again, then watch and wait will be less stressful. Each of you are an inspiration to me to continue living life and to stay confident and positive.

Thank you again for responses!

Catherine
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25F, Dx RCMD MDS 1/2012, on wait and watch for who knows how long
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