Brand new!
 

Morning! I was just diagnosed yesterday with this (hard to say) disease. My head is still spinning. I don't fit the normal demographic apparently, of older 65+ Caucasian men. I'm 48 divorced black Mother of a son in college. I've been battling anemia practically all my life, I've had several transfusions and iron infusions. Nothing seem to keep work in keeping my Rbc @ acceptable and normal range. My WBC is now @ 3.1, and my bmb came back abnormal. Additional testing brought the final prognosis of MDS. I am optimistic, relatively healthy with no prior cancer or treatments at all. Uncertain how & why I was chosen but here I am, and I'm ready to fight with the rest of you!

Sorry you ended up here but welcome. As you read these threads you'll see that many of us don't fit the profile. You're not alone.

Welcome AJ.

I was only diagnosed a couple of months ago myself, it is very overwhelming experience when you are diagnosed. You are among friends here, who have been a great source of information and support for myself and will be for you as well.

Honey

A.j,

Sorry that you have to go through this, but the fact that you are young, is a good thing... As for not fitting the profile, many don't, Robin Roberts from the good morning america show is also an MDS survivor (successful bone marrow transplant)...

You need to look at where your at, and what category you fit into: Low, Intermediate 1 or 2, or High Risk... This will point you in which direction you need to take with your treatment if any...

It's possible that some sort of vitamin / mineral difficency is making your symptoms worse at this time... (ie. Vitamin B's, D3, K, Folic Acid, Copper, etc.)

Taking care of these is like low lying fruit, and may help ease some the symptoms...

Use this forum, as you will find MUCH useful information...

Best of luck, and God Bless...

;) Thanks so much for the warm welcome! I'm looking forward to learning from you all and sharing information. I knew that Robin Roberts was dealing with a serious blood disease, of course when it affects you personally it causes you to pay closer attention. Her MDS, is a result of her chemo treatments from breast cancer. I've never had any type of chemo etc. I guess I'm wondering if there was some way unknowingly I put myself in danger, that could have been avoided. I'm just going to continue to read all of your stories, comments and suggestions and be prepared for the best.
Thanks again!

A.j,

If MDS isn't secondary to previous treatment and you don't know that you were exposed to dangerous chemicals (like benzene at an industrial job) then chances are that there's no identifiable cause for your MDS. That's true in most cases, including my wife's MDS.

Since we can't look back, we look forward!

Hi A.j.! I reckon just about everyone on this forum is unique. There are at least 7 different types of MDS and within each type it seems there are numerous variations. Let us know when you can which variety you have. All the very best as you continue on the trail of discovery and find out what if any treatment will suit you the best.