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Old Wed Jan 11, 2012, 03:01 PM
Brenda K Brenda K is offline
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Join Date: Jan 2012
Location: Terre Haute, IN
Posts: 1
Terre Haute MDS? patient

I was diagnosed w/MDS a couple years ago. Kept asking my doctor for my subtype, etc. & getting no answers. He actually told me that I READ too much (I was searching using reputable sites, not Wikipedia...) Sighed when I asked a question requiring him to look at my records on his laptop. At that point, I asked for second opinion. Saw different doctor in same practice (Hux Cancer Center) after getting recommendation from distant family member. HE said he didn't think I had MDS & that my consistently low white cell counts could be normal for me or caused by the Imitrex I take for migraines! My neurologist had never heard of this. Frankly, I feel no confidence in the doctors there now, and insulted & patronized, so I'm considering not even returning for my scheduled blood work. (I had a low IPS score, so was on the "watch & wait" approach to treatment--originally blood work done quarterly, now 2x yearly.) But what is the point of my returning if I don't have confidence in the doctors now;why would I want them treating me if/when my condition worsens? Is Plainfield or Indianapolis the nearest sites to see other doctors specializing in MDS? Any info/suggetions appreciated. Feeling rather hopeless, like giving up.
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