Do I have MDS??? Male, age 53

[Timothy Todaro]

My Mother died of MDS, (and other complications) but that was what was on the death certificate at age 78. I am wondering if I have MDS; aware that it is not hereditary but read it could be. Symptoms I have are: Former Smoker, had Radiation treatment after Radical Prostectamy last year. Bruise/bleed very easy. Last blood work was in February 2016; WBC 3.9, RBC 4.4, Hemoglobin 13.5, Hematocrit-Whole Blood 39.7, Platelet count 126, and Lymphocyte 17. I have an upcoming appointment with my GP and am having blood work done again. If similar results should I ask to see a Hematologist or am I being a Hypochondriac? I’ve been ill off/on for the past 3 years. Any help/comments/opinions would be appreciated.
Thanks,
Tim Todaro
Vilano Beach Florida

[Ed Rozendal]

I think it would be wise to speak with your Dr. about your concerns and go from there.

[Anonymous]

Dear Tim, Thank you for your post. I am saddened by the news of your mother’s passing. There are occasional familial cases of MDS, however, these are exceptionally rare. The genetics of MDS are complex, and the influence of inborn and inherited changes is either subtle or non-existent. In cases where there is an established history of MDS in the family, I always let other family members know that they should have annual bloodwork done and to watch their counts as an indicator. If your counts are abnormal, I would then make an appointment to see a hematologist. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/.

Hopefully a treatment, and eventually a cure, for MDS will result from our efforts.

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[Nadeem Khan]

My mothers case similar to your late mom she was a very healthy 64 yr old when she got mds and passed away 6 yrs later never a drinker or smoker but she had and beat breast cancer twice but we now believe that the radio and chemotherapy she had most probably brought on this mds about 20-25 yrs later our situation here in the uk was a scandal no info no forums no help to understand this horrible disease and lenolidomide not offered due to costs we even considered buying and treating ourselves but were told if you go private you will pay for everything nurse care etc my mother fought it and smiled right the way to her final breath and was a testament to the old school stiff british upper lip types and never once complained about her situation all i can say to you pal is i hope you have loving family members around you to fight your corner for you because we found we were fobbed off at every stage of her illness and she was almost written off due to her age i wish you luck friend and will pray for you.

[LeAnn Duke]

Hi Tim, I am a 59 yr old female with MDS with no history of smoking, coming in contact with Benzene or any cancer or radiation or chemo treatments to cause this MDS. I have sought three different opinions and gotten each time a confirmed diagnosis of MDS, so I would highly recommend that you see a hematologist to have more specific tests done. From what each of my Dr’s have said a bone marrow biopsy is the only sure way they can tell if it’s MDS. They will also do genetic testing on your blood to check for abnormalities or for genetic changes in your cells. I have had this done three times. One piece of advice: If you opt for the hematologist and they do a bone marrow biopsy, you can ask them to put you to sleep with a twilight drug so that you feel nothing. I hear that the biopsy can bee relatively pain free at places that do biopsies all day long, but just because a Dr has done biopsies doesn’t mean he’s good at it!!! So insist they put you out if you don’t have a high pain tolerance level. My opinion is why allow them to hurt you if they don’t have to!! Good luck and I hope for the best for you!

[Timothy Todaro]

Thanks LeAnn,
Saw the hematologist and my numbers were in the normal range, which is odd because last few times my blood work came back with low platelets and low WBC. He told to have it checked in another 6 months. Told him about about my Mother having it listed on your death certificate along with my other symptoms. I’m going to wait the 6 months and see what comes about.

When you had you three different opinions with all three giving you the same diagnosis, what were the underlying factors that made the diagnosis MDS all three times? My symptoms have been low platelets, low WBC, easily bruising,(not on any blood/heart meds), former smoker, radiation after Prostate removal, nasal congestion, high Eosinophils, chills/cold sensations.
Thanks,
Tim

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