Elevated MCV 103 MDS--help please

[Bobby Jo]

Hello my name is Bobby Jo and I am new to this forum although I posted once or twice 5 or 6 years ago on the old forum. At that time I had a low wbc-2.9, although it had been on the lower end of normal since I can remember (for about 20 years.) It's since been back to around 4 to 5. What's happening now is that my MVC, which has been on the high side of normal since I can recall, (lowest being 96.?) and one time 6 years ago was 100.6, last few years 99, last year 101, but just a few weeks ago it was 103. For various reasons I'm no longer going to my "GP" so my gastro did the blood work. He's going to follow-up in 3 months with anothe CBC as well as checking for B12 deficiency and Prenicious Anemea, etc. I've had a B12 in the 300's before but a supplement brings it up, so don't think this is my problem. I'm quite frightened that this has now developed into MDS, since the MVC has never been this high & during the past few years it's been a couple points higher than previously. Sorry about the length of this. This forum helped me a great deal several years ago with the low WBC (went to a hemo who watched it for a while and it stayed within normal limits.) My MVC then was 98 or 99 and they never said anything about that. I'm so upset as I'm struggling with other health issues, i.e. oxygen desaturation at night where no cause can be identified, now this where no cause seems to be identified. Does it sound like MDS to you? Is it okay to wait the 3 months? What if it's still high? Does that always mean MDS? Thank you so much. I'm quite upset. Bobby Jo p.s. I'm a 58 year old woman.

[Neil Cuadra]

Hi Bobby Jo.

The symptoms you've described don't sound much like MDS to me, or aplastic anemia either. From what I've read, elevated MCV (mean corpuscular volume) might result from B12 deficiency, as you say. Your white count may be on the low end of the scale but it seems to be your "steady state."

Did your blood test show that you are anemic (low red blood cell count) or have low platelets? If not, you don't match the symptoms of either aplastic anemia or MDS. If they did suspect either of those diseases they'd perform a bone marrow biopsy and aspiration to find out what's going on in your bone marrow, but I don't see why they'd even suspect AA or MDS.

Marrowforums members are mostly patients and caregivers (like me) so we can't give expert opinions like doctors, but since you've been stable for years it seems reasonable to me to wait for your next blood test to see if your MCV's small increase (from 101 to 103) is anything to be concerned with. Even if it's slightly high again, it wouldn't indicate MDS.

* * *

By "the old forum" do you mean the AA-MDS-TALK listserv?

[Bobby Jo]

Neil, thank you so much for your reply. It really came as a huge relief to me. I don't think my other counts were elevated or low as I asked about my
CBC & he said one portion of the RBC was elevated, the the MCV. I'm hoping he would have told me if there was anything else off as he told me my cholestral was slightly elevated.....I did specifically ask about the WBC, since several years ago it had been low. He then told me it was 4.2, which is within my "normal range", at least for the couple of decades that I've kept records.

I'm thinking that I may have been on another MDS forum a few years back and thought that this was the same one. I think it was called the MDS Foundation---I know that there was a page listing the Centers of Excellence for the treatment of MDS. Funny, if I remember correctly, there was a very kind, knowledgable gentleman named Neil on that forum as well:-) My mistake I think, but glad I found this forum. Thanks for your kindness. Blessings, Bobby Jo

[Neil Cuadra]

Originally Posted by Bobby Jo

I'm thinking that I may have been on another MDS forum a few years back and thought that this was the same one. I think it was called the MDS Foundation---I know that there was a page listing the Centers of Excellence for the treatment of MDS.

You have a good memory. That's the MDS Foundation website. They have forums and a list of Centers of Excellence. I haven't participated in those forums but I'm glad to hear there are helpful people there.