Suspected MDS?

[lotusbud]

After bouts of malaise several years ago, two and half a years ago they did a bone marrow biopsy on me. Then again half a year ago, saying that I have a suspected MDS - but can't be proven with certainty. Apparently some disturbance in all cell lines, normal cytogenetics. Meanwhile, these years my whites have hovered around 3700-4500, reds at 3.8, heglobin 12-13, and no problems with platelets. Lymphocytes always about 1.1. Suffering with bouts of dizziness, that has come nearly a fainting feeling.
So I am confused, as to do I *really* have MDS? My hemo wants to see me in about half a year; the blood values are stable. So is this the watch-and- wait?
I wonder, are there other people around who might have had MDS for ten-twenty years-?

[rose mcmillin]

Hi, Just wanted to wish you wellness. Your numbers look great to me. Could you possibly be suffering from low blood pressure? That also causes dizziness. Hopefully, someone will will be able to solve your mystery.
Good luck to you, Rose

[Dick S]

It looks like your numbers are borderline on whites, reds and HGB. They may have found other things in the BMB though. Basically I would think your numbers would not cause much in the way of dizziness. You may want them to look deeper for other causes.
My numbers are a good bit lower than yours, but I am still on a watch-and-wait list for four years now as I watch my numbers oh so slowly drop. It drives me crazy at times to watch my slow deterioration and the increasing weakness and fatigue.
I'm in the Veterans system and they follow Medicare guidelines, get a lot of their funding from them and it's a money numbers game that they aren't willing to shell out 'til they absolutely have to. Sad to say, but true.:( I don't know how it is in Israel.
Good luck lotus and welcome.

[lotusbud]

Hi Dick
and thanks for answering. That is exactly my feeling: in my case, the decline is soooo slow, but there is a trend - downwards. I graphed all my blood test values along the years, and well. Even with infection the WBC counts do not get over 5200. RBC have been around 3.8 for a year. Frustrrating. They told me maybe I have also fibromyalgia, which would explain the fatigue-dizziness-aches.
My hemo once quipped that "anyway there is no treament". Otherwise I do trust him. I have a good team of doctors, though they can;t heal me. At least they are pleasant.
The BMP and aspiration found mikromegakaryocytes, macrocytes, and some problem with the maturation of monocytes. I wonder about immunotyping; anybody knows about that?
Luckily the HMO works pretty well, so far anytests I wanted - or rather my doctors - I got with minimal payment. Though certain drugs would be a problem; currently I am not taking any.
Thanks for sharing.
Michal