Newbie-Unsure of DX

[Zoe]

I have not been diagnosed with anything yet, but macrocytic anemia. They have ruled out B12, iron, folic acid deficiencies. Ruled out hemolysis, liver disease, lupus, COPD, gallbladder, liver problems, and a few other things. I am scheduled for a BMB on the 15th. My platelet level has been normal to slightly elevated, RBC, HCT, HGB all low. RDW, and MCV high and climbing, although my retic count was on the low end of normal (I understand it should have been high due to the anemia).

My anemia is mild (last CBC was 10.5, and has never dropped below 10), and has remained so since it was first found in January. I have researched so much, and nothing seems to really fit. MDS seems the closest match to my blood work, but since the anemia is mild I am not sure even that fits.

I guess I wonder if I could be in early stages of MDS, or if I am looking down the wrong alley all together. Hopefully the BMB will show something, but with the test a week off, and results several weeks away, I keep researching.

Anyone have a slow start with MDS? Or did all of you have bloodwork with extremes at diagnosis?

Zoe

[Neil]

Hi Zoe,
The only way to confirm a MDS DX is with a BMB.
You should have the results a couple days after the aspiration/s. Cytogenetics generally take about a week.

[Jerry]

Hi Zoe …

Take a deep breath and try to relax … Neil is absolutely correct that a BMB is the ONLY definitive way to be sure of a diagnosis of MDS. And even then, there are many forms of the disease and new medicines and treatments options are becoming available on a fairly frequent basis. Only after determining what form of the disease you have (if at all) will you be able to begin researching what will be your best course of treatment. Also, you age will help shape your treatment options. (I never ask a lady her age!)

I notice that you are from Ohio. So am I. I live in the Columbus area but I go up to The Cleveland Clinic since it is a Center of Excellence for MDS. That might be an option for you IF you have MDS. Thhis forum is a great place for information, please don’t hesitate to continue asking questions.

Jerry

[Zoe]

Thank you both. I guess I am driven by a curiousity more than fear (but driven I am :^)I am not too worried about it. I figure if it is MDS, it must be a mild form for my HGB to stay steady for so long. I was just curious if anyone started out this way. Kind of a yes or no question. I think asking questions helps me cope. It keeps me in the intellectual realm. When I stop asking questions, I am scared.

Jerry, I am on the other side of Columbus. Cleveland would be an all day trip for me. I haven’t really thought about any next steps, because, as I said, I am losing myself in the intellectual. It helps (?) that I have always had an interest in the medical field. Maybe it just makes me more obsessive. I do it with everything–I recently read a novel set in ancient Pompeii. I found myself researching Pompeii, the Roman aquaduct system…Guess that’s just how my brain works, and how I cope with the unknown.

[paml]

Zoe,
For your yes or no question, I’m a yes. My first dx was refractory anemia. It took 11 years before I was actually dx’ed with mds, that was 6 years ago.

As advised, wait for the bmb.

Best Regards,
Pam L.

[camiboxer]

My dad was also initially diagnosed with macrocytic anemia. Only after the BMB was he diagnosed with MDS (rars and still waiting on chromosome test results).
His RBC have been at 11.5 for the past year + and just last month dropped to 10.5.
He feels fine, says he isn’t tired and continues to enjoy the heck out of life.
So far no meds or any other forms of treatment required or initiated.
We are also in Ohio. I am in Westerville, he is in McArthur (southeastern Ohio). He is seeing a Dr at The James.
Best of luck to you and keep us posted.

[Zoe]

Thank you. I am encouraged that this anemia could stay stable for a long time, even if it is MDS. I think I had this fear that my counts would drop any day. It didn’t help that all the research (I have read it is old, and no longer necesarily accurate)I found gives a prognosis of 8-12 years at best for RA. Now it is just one more of those things in life that could happen, but you don’t go dwelling on. And you have satisfied my curiousity, that really helps (maybe I have a strange mind :^)

Susi, I am in Logan. I have worked in McArthur in the past. What an interesting town! It always amused me that there were no fast food restuarants in the county, but now they have a Subway. Whoo Hoo, McArthur is growing!

Zoe

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