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Old Fri Apr 2, 2010, 08:53 PM
bun bun is offline
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Join Date: Mar 2010
Location: Lakeville, MN
Posts: 4
MDS Center of Excellence

Getting a Mayo review of the bone marrow will be a good step. Mayo Clinic is an MDS Center of Excellence. Everything I've read over the last 3.5 years since MDS was suspected in my husband ... a bone marrow biopsy is necessary to make a diagnosis.

Sometimes a single BMB is inconclusive & only over time & looking at multiple biopsies along with what else is going on with the patient can an eventual diagnosis be made. If chomosomal abnormalities are present, a diagnosis can be made ... but if there are no chromosonal abnormalities pathologists & hematologists can not (& should not) assume MDS.

Read what you can to learn about MDS and other bone marrow failure diseases. Ask questions of your doctor. If the BMB review by an MDS center of excellence (such as Mayo) is inconclusive ... ask questions until you understand why it's inconclusive & understand what will be done to monitor further. You should expect additional bone marrow biopsies. Eventually a definite diagnosis will be able to be made (changes over time, additional symptoms, etc). Is someone going along with your father in law to help understand & ask questions? If that's not possible, can you work out being involved in the examination via a conference call?

I would also suggest your father in law be seen at an MDS Center of Excellence if possible. If one is not considered "in network" with his insurance, work with his local hematologist to get a referral. (Help him in advocating for himself).

In my husbands situation, since he had no chromosomal abnormalities in bone marrow biopsies, we waited a little over a year & after 3 BMB & went in person to Mayo. When dealing with rare diseases & inconclusive tests... it is beneficial to seek experts. It doesn't have to be Mayo Clinic ... just find an MDS center of excellence. (A side note, we have been very happy with my husbands experiences at Mayo during his MDS journey. Though Rochester, MN is a small Minnesota city, people from around the world come for diagnose & treatment of various conditions)
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Beth, wife of Tom 48 - MDS (no chromosome abnormalities) suspected since 1/2007, confirmed in 2008. Vidaza since Jan 2009 with excellent results since June 2009.
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