If not MDS then what?
 

Hi guys. First time poster here. I'm 'in the process' I guess you'd say of being diagnosed with MDS. i'm 35 and have two young children. I've been aneamic for most of my life, (never really ate too well when young-hated meat etc) anyway ... in November last year we lost a baby in hospital at 16 weeks pregnant, and then my blood was almost gone. I was given an iron infusion in hospital in January this year. Since December last year (3 months) my platelets and white blood counts and dropped dramatically. From normal to platelets being 56 at last count. Ive had the bone marrow biopsy done (ouch!) and the results are the pathologist says MDS. The hematologist isn't too happy to diagnose it because of my age however! also, we are waiting on the cytogenic testing which we get results for in a nother week or so. My question to the hematologist was 'if cytogenics are normal do I still have MDS and he said'wait and see....so my question to you guys is..if its not MDS what else could it be? I have no other illnesses etc. The iron has 'cured' my anemia in that my HB is now in normal range. Its the other two that aren't working. He said the RCMD so low blasts at this stage. any advice appreciated. I've been researching MDS a lot, and the prognosis doesn't sound very appealing...he did say a bone marrow transplant is the only cure at my age. Thanks for listening .. :):)

lillshowell

Hello. First I would not even think about trying to diagnose or speculate on the possible alternative diagnosis. If you have not already, I would find the best teaching hospital in your area and go for a second opinion with a specialized hematologist. My local hema/oncologist sent me to Emory the teaching hospital in Atlanta. Many times the bone marrow biopsy that is done at a local hospital is not adaquate to diagnose and many hematologist do not specialize in blood/marrow disorders. It is not uncommon for diagnosis to take a while (months). Believe it or not a platelet count of 56 is OK as long as your levels are stable. Are your platelet levels decreasing? Also what is your white count? Best Wishes to you:D

Scott

Hello there! I'm also a youngish one with MDS! Some Drs can make the whole process difficult unfortunately. This disease can be a very long road, particularly for diagnosis to start with & then waiting around to wait for counts to go wrong before they will treat you.

MDS can be agonizing like that & when you're young can be plain frightening. I'm so sorry about what you've been through already. Try & remain positive & hang in there. I'm around if you need to chat more. And there's lot on here to ask questions to.

For now, just try & chill. Waiting for results is always hard. But be prepared for a long road ahead. Even a long road on uncertain WAITING. Bless you!

Jules

While there is volumes of history on this site regarding MDS oth as a patient and caregivers, we are not your Doctor. You need to contact a hematolgist that has solid experience with bone marrow disorders.

I could render a guess what other disorder it could be ut that would be foolish. I do not know where you reside but there are MDS Centers of Excellence throughout the U,S,. If you Google MS Centers of Excellence you will find them listed. I strongly suggest that you make every effort to be seen at such location for a solid diagnosis.

You should be able to return home with solid answers. I can identify with your concerns as I have been there but have discovered that I am in far better shape than many others who have MDS. My counts although not normal are still manageabke

Best wishes and know that there is strong suppport here at this site.