looking for some info

[angel_one]

Hello. I am hoping to find someone tohelp me get or tell me where I can get some information about myelodysplasia. My grandfather was dx about 3 1/2 years ago. It took his life about a year later. I read up on it then and am continuing to do so now for other reasons. Some things that I have read are not very clear. Does anyone know if this disease is hereditary? Some of the signs and symptoms that I have read about are very vague. And I know that it is different with each person. However, maybe someone could share their story with me and let me know what kind of signs/symptoms you experienced?? Did anyone have to mention it to their doctor to be tested or was it just done?? I dont know how to suggest this to my doctor without having all the facts that I would need to hvae to go to her with it. I greatly appreciate any and all help that anyone could give me. Thanks in advance.

[ButchL]

I have no facts but just my experiences. From reading this forum everyday and other sources, it would seem that MDS seems to be diagnosed when going for another reason to the doc. In my wife’s case, she had a totally unrelated issue which required routine blood work. Before we knew it they were asking all kinds of questions about how she felt etc. Her platelets were at 10,000. They gave ger tranfusions and hospitalized her. She had no other symptoms other than being tired which we attributed to her 60 hour work weeks.

We did ask about it being hereditary when she was diagnosed as she had 2 daughters. We were told not to worry about that.

Like I said, none of this is fact, just my experience and observations.

Good luck in your search…

Butch

[Suzanne]

My diagnosis too came from a routine physical when they noticed that my white count was down just a little-still in normal range. Sent me to a hemo to be checked out for anemia and after checking out lots of things that came back negative he ordered a BMB when all of a sudden the red count and platelets went down just a tiny bit too. The results came back RAEB. I had no symptoms.

[Suzanne]

Oh and I have been told by all my Doc’s that it is there is not evidence that it is hereditary. that when relatives do have it it is usually have from exposure to one of the chemicals that seem to be connected to the disease.

[Neil]

There are 2 places on this site you can get info.
In the upper right corner of this page there is a reference “Post a Reply”. Click on “search” and type “hereditary” into the box and it will bring up previous threads on yhr subject.
On the Home Page for this site you will find several links on the left side. Click on “Patient Information” and you will find enough material on MDS that will take a day or two to read.
A condensed version is: MDS is rarely found in the same family. In the rare cases where more than one family member has it, the reason is environmental rather than genetic. For example: if a family had a gas station that employed several family members, their contact with gasoline fumes and actual physical contact with gas (like washing grease off ones hands)might trigger MDS as a result of the contact with the benzene in the gas. Another example might be contact with pesticides in a family landscaping or nursery business. These are possibilities and by no means certainties. It would take a considerable time for members of different generations to display symptoms. Contact with a substance suspected of causing MDS could take decades to do any damage.
As a rule MDS is discovered when a patient goes in for a routine check up or if they are complaining of fatigue and generally feel run down. Another is after chemo/radiation for another form of cancer triggere the disease as a result of the damage to ones cells.

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