New and wondering what's going on?

[LadyInWaiting]

My doctor has told me that I have a “very questionable myelodysplasia” or that my body is taking a long time to get over mononucleosis. So, here I sit, wondering what is going on? I have fatigue, chills and sweats, headaches, and malaise. What does “very questionable myelodysplasia” mean? Oh, and I have never had mononucleosis. He did blood tests to test for HIV and hepatitis, which were negative. How long should I wait for a definitive diagnosis?

[Suzanne]

Sounds to me like they do not have a definite diagnosis.Can’t tell you how long to wait. I believe if they do a bone marrow test they will know whether you have MDS. I would go to a Hemotologist that is familiar with MDS and find out. Put Mono in a search engine. We used to call it “the kissing disease”& thought of it as a teenage disease. It does make you very tired and you usually run a low fever. And poeple other then teenagers do get it. For your sake lets hope it is mono.

[LadyInWaiting]

Hello Suzanne, I’ve had lymphocytosis for over a year. Last month, I developed neutropenia. I, also, am somewhat anemic. My hgb is about 10.4. My ANC is 1.4. He did do a bone marrow biopsy and aspiration, and the almost diagnosis is “very questionable myelodysplasia”. I am wondering if there’s a way to get a definitive answer?

[franm]

Hi Lady:

First of all how old are you? Also did you have a CBC With Differential/Platelet blood test? If so, it will show what your WBC, RBC, Platelets etc. Also, like Suzanne said go to a Hemotologist that can test you more complete.

Fran

[LadyInWaiting]

Hello FranM, I’m 46 years old. Here’s my last CBC report. I am seeing a hematologist. That’s why I don’t understand why he doesn’t know what it is. I just kind of wondered how he came up with a “questionable myelodysplasia”?

Here’s my CBC:

WBC 5.0 K/uL —
RBC 4.74 x10^6/uL–
HGB 10.9 g/dL Low —
HCT 33.7 % Low–
MCV 71.0 fL Low–
MCH 23.1 pg Low–
MCHC 32.5 g/dL Low–
RDW 13.1 %–
PLT 314 k/uL —
MPV 7.3 fL Low—
NE% 31.7 % Low—
LY% 53.1 % High

Manual Diff

SEGS 28 % Low–
Lymphs 50 High —
Monos 14 High —
Eos 4 High–
Basos 4 High–

Plt est adequate
Microcyte 3+
Hypochromia 2+

[patti]

Have you considered getting a second opinion from an MDS center of excellence? I think that would be a logical next step. It’s really hard to say looking at your counts. They don’t look terrible. A little low but….

patti

[lindajo]

I went to three centers of excellence and that is the same diagnosis I got at all three. They felt my marrow failed and should have recovered but didn’t and so they call mine very early mds. I have been a patient since 1991. I have had infrequent transfusions and antibiotics as needed. It is possible they may never come up with another name for what you have. I have been waiting for 15years for a better name for it. At least it isn’t AML.

[lindajo]

I just noticed you are from Kansas. Where in Kansas?

[LadyInWaiting]

I live in Wichita. I just found out today that they didn’t do any cytogenetics on the bone marrow, nor were they able to do a “cellularity” test because there was a lack of bone marrow tissue.

[LadyInWaiting]

LindaJo, where are the Centers of Excellence that you went to? Are there any in Kansas?

[lindajo]

I went to St. Louis, Barnes Jewish; Sloan Kettering in New York; and Cleveland Clinic in Cleveland Ohio. I recommend Cleveland as the best or MD Anderson in Houston TX.

[lindajo]

Sorry, but I posted the reply before I answered your question. No there aren’t any in Kansas but there is one in Omaha Nebraska

[LadyInWaiting]

Linda, did you have fatigue, chills, sweats, and headaches? I’m miserable. I keep thinking that maybe I’m going through menopause or something…but I haven’t had a period in about a year. For the last 2 or so years, I may have had 3 cycles. So, I think that if I were going through menopause that it should be over by now.

[LadyInWaiting]

One more question? Do I need a referral to see a doctor at a Center of Excellence?

[lindajo]

I have all of those symptoms. When I was diagnosed at 29 my period stopped for a year and a half. Then it restarted and felt like I was going through puberty again.

Yes you need a referral to get into a CofE. Your hemo can and should be glad to give you one. Linda

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