MDS RA with Multilineal Dysplasia

[Steve P]

Dx 11/12/07 with low grade MDS RA with Multilineal Dysplasia (whatever that is?); WBC 26.7; RBC 5.26; Hemo 17.6; Plat 20 and on and on with a bunch of stuff I don't understand but evidently need to learn about.
Hi There Everyone - Name is Steve and while I'm sure that I have had this for a while (1 yr) didn't become apparent till routine physical last month. Doctor first treated me for ITP - Prednisone - but hasn't done anything and when Bone Marrow work came back showing MDS he has now started to take me off of that. Does anyone out there know what to make of the Genoptix Lab Flow Cytometry Report or the Cytogenetics Report (MDS FISH was normal?) What is Multilineal Dysplasia? I guess I'm like most people newly diagnosed - lots of questions, little understanding, a little apprehensive, but very willing to do whatever it takes. I have learned in the last week that one had better take charge of this illness and possible treatment options as evidently along the way we as patients must make a number of decisions for ourselves. I have also learned that it is all pretty complicated so any good advice will be greatly appreciated. Going to John Hopkins, Dr Steven Gore, who I think is on the leading edge of MDS research - does anyone have any experience at JH or with him? I have figured out that I don't have the flu and this will be around for a while - so I guess I've got lots of time to learn about it. Definitely not a week long project!
What I've been told is that I have very low grade and that the only thing really out of whack is platelets. While that isn't good I guess lots of people discover this situation in far worse shape than I. Actually I feel pretty good.
Hope to get to know some of you and certainly would appreciate your input. Thanks!

[kmiller]

Hi Steve, I saw your message today and definitely felt some kinship, as I'm new to all this too. My local MD suggests I see Dr. Gore as well, so I'll be trying to set that up this week. Another friend suggests looking into NIH, which is closer for me. For me its my WBC that are most affected, though no probs with infections yet. I'm in my early 40's with a young family, and this is all pretty scary for sure. I definitely feel empowered by doing my own research so I can make informed decisions. Good luck with Dr. Gore! Kelly

[Zoe's Life]

Steve,

Welcome to the forum. Your platelets are low, and your whites are high, but your reds look great. Do you have any chromosome abnormalities? This would be on your cytogenics. Multilineal Dysplasia means that more than one line (red blood cells, white blood cells, platelets) are affected by your disease.

There are a number of knowledgeable people here, so ask what questions you have. Someone should be able to help.

Zoe

Edit Note: the confused icon is because I am not sure I spelled knowledgeable right, not because of the people. I noticed this when I went back to read, it looks like I meant the people here. Sorry.

[choijk]

Welcome Steve to the forum. Like mentioned earlier, multilineal dysplasia means that more than one of your blood lines are affected. But overall, your counts look great. For platelets, there has been some discussion that juicing fresh pineapple juice with black seasame seeds help. I hope you are able to take great advantage of this website as I have. Please let me know if you need anything....

[Margie]

I also have MDS RA with multilineal dysplasia. Don't panic yet. I was diagnosed three years ago during a routine physical and possibly had had the disorder at least a year before that. My counts - red, white and platelets have slowly gone down over the years. This year in March after trying Aranesp to no advantage, the doctor began packed red blood cell transfusions. I get 2 pints every 3-4 weeks. This seems to work for now.
You have what seems to me an unusually low platelet count at this point compared to your other counts. Mine is still in the 30-40 range after all this time. My white count ranges from 1.1 - 2.2. Based on what I have experienced, you will have time to take advantage of every treatment available and what may come in the future.