MDS suspected, hematologist in Ohio?

[mrseche]

Hello! I stumbled across this board tonight doing research for my step mom who is searching for a diagnosis for her illness, but her doctor continues to run blood tests (even a bone marrow biopsy) without actually diagnosing her. He has said he suspects it might be MDS, but nothing definite yet. This has been going on for almost 5 months now and she continues to feel worse and very anemic because her RBC is low even with prednisone he has her on. I have asked her to seek out a second opinion. I am not sure how easy this is to diagnose but to me this seems like a good reason to seek out another opinion.
I'm posting to find out if there is anyone here who can recommend a specialist in Ohio? She is currently seeing a doctor at the Cleveland clinic, but lives closer to Columbus. Recommendations would be welcome, no matter the distance from Columbus. I'm very worried that in taking so long to diagnose her, her health will become worse than if a diagnosis were reached quicker so treatment could start on whatever this is...

Thank you in advance for any information you may have!

[bailie]

I am sorry for your mother-in-law's situation. Always good to get a second opinion. There are numbers that become very important. With the bone marrow biopsy, the results should have mentioned a "blast count/percentage". What was that? What are the WBC, RBC, platelets from the blood tests (CBC)? Have these numbers been deteriorating from test to test? What is age of mother-in-law?

Cleveland Clinic should have a good handle on this.

[Birgitta-A]

Hi mrseche,
If you look at the meny of this page you will see "Home". There you can find a list of clinics and some of these are the very best.

In Ohio Cleveland Clinic as bailie wrote is very good:
Case Western Reserve University, Case Comprehensive Cancer Center NCI Comprehensive Cancer Center
Cleveland Clinic Foundation, Taussig Cancer Center MDS Foundation Center of Excellence
The Ohio State University Comprehensive Cancer Center NCI Comprehensive Cancer Center
Kind regards
Birgitta-A

[triumphe64]

Dr. Maciejewski at Cleveland Clinic.

[kyis]

Dr. Maciejewski and Cleveland center are supposed to be great. I have even thought about flying there from CA to get another opinion.

[joniHam]

Dr Maciejewski is world class. You just don't get any better and you should rest easy that he will make a very thorough and careful DX. He serves on the National Board, has presented internationally and is honored and distinguished for his work at the forefront of this disease. Do not second guess or mistrust yourself in making the choice to see him. He runs a program in translational hematology at a Center of Excellence. And he can help you with clinical trials if that is the direction you need to go. He has the resources to do whatever it is that is needed to best treat you.

I am his patient but admittedly I am not a very good patient. He is a great doctor. I just happen to be an avoider when it comes to adversity. I know that burying your head in the sand is not the solution. But, You sound like you will be a good and active patient in the process -- that modus operandi should serve you well in your journey. I know it is difficult but keep smiling ~Joni

[triumphe64]

I was told that I might have MDS because of my age . It turned out to be something else that only affects my red cells.

I go to Dr. Maciejewski twice a year from Dallas. I have been doing this since April 2008. It has been well worth the time and expense because I continue to improve.