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Old Tue Apr 6, 2021, 01:53 PM
BruceinWA BruceinWA is offline
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Join Date: Apr 2021
Location: Washington State
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Hi. No diagnosis yet, still watch and wait.

Hi,

First I'd like to thank all the people who have posted their stories. It really helps.

I'm in my mid 50's.

My story started with an mri to diagnose hip pain a few years ago. The radiologist saw "red marrow reconversion". The mri led to a cbc which revealed mild pancytopenia and led to an appointment with a Hematologist.

A bmb was performed and while it wasn't normal it also didn't meet the requirements for a diagnosis (5% erythroid dysplasia, 2.6% blasts, hypercellular marrow, and a few other things that weren't normal). The pathologist did state that if nothing else could explain the non normal items then an emerging case of mds had to be considered.

I had to fire the first hematologist due to incompetence and decided to educate myself on mds and have blood work done at an independent lab to follow the pancytopenia on my own until something changed.

Something changed last fall and I was able to make an appointment with a well regarded Hematologist/Oncologist in the local area. His workup revealed reticulocytosis, almost no haptoglobin, no pnh clone, no compliment issues, etc. AFAIK he's ruled out everything he can with blood tests. There is also mild painful splenomegaly.

The next Hematologist appointment is later this month. I feel that something is changing due to easier tiring, increasing spleen pain, easy bleeding, strange itchiness and more unexplained bruising than before. This time I might let the Hematologist schedule the bmb he always suggests.

I have to say I'm not a fan of the bmb and it's hard for me to reason the expense and hassle of the outpatient procedure until the cbc tests start going farther downhill or I start feeling noticeably worse.

I've been reading the wealth of information posted here for almost two years now but declined registering because I wasn't diagnosed with anything. I'm also a little wary that my web browser always tells me it's an unsecured site.

Today I decided that I'd come out of lurking mode and introduce myself.

Bruce
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Old Tue Apr 6, 2021, 03:10 PM
Neil Cuadra Neil Cuadra is offline
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Bruce,

I'm glad you've told us about your situation, and I hope it won't take much longer for you to get a clear diagnosis.

What are your blood counts like? Just how low? Being tired, bleeding easily, and bruising are the classic symptoms of pancytopenia, which could be from a bone marrow problem. But anemia and easy bleeding are also known side effects of splenomegaly.

"What is causing what?" seems like the medical question that I'd be hoping to have answered. If you have to have another bone marrow biopsy to find out, I don't envy you but I hope it provides the answers, and just as importantly an idea of what treatment is appropriate.

By the way, the "not secure" message you probably see in your web browser is because Marrowforums uses http instead of https. Our hosting service doesn't provide a simple method to make the switch, and that's delayed the change. Since we're a discussion site that's publicly viewable, not a site that stores private personal or financial information, it hasn't been a practical problem. And we keep a close watch on access to the site in any case.
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Old Tue Apr 6, 2021, 08:31 PM
BruceinWA BruceinWA is offline
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Join Date: Apr 2021
Location: Washington State
Posts: 2
Quote:
Originally Posted by Neil Cuadra View Post
Bruce,

I'm glad you've told us about your situation, and I hope it won't take much longer for you to get a clear diagnosis.

What are your blood counts like? Just how low? Being tired, bleeding easily, and bruising are the classic symptoms of pancytopenia, which could be from a bone marrow problem. But anemia and easy bleeding are also known side effects of splenomegaly.

"What is causing what?" seems like the medical question that I'd be hoping to have answered. If you have to have another bone marrow biopsy to find out, I don't envy you but I hope it provides the answers, and just as importantly an idea of what treatment is appropriate.

By the way, the "not secure" message you probably see in your web browser is because Marrowforums uses http instead of https. Our hosting service doesn't provide a simple method to make the switch, and that's delayed the change. Since we're a discussion site that's publicly viewable, not a site that stores private personal or financial information, it hasn't been a practical problem. And we keep a close watch on access to the site in any case.
Hi Neil,

My counts vary. Mostly the RBC and WBC are just mildly cytopenic, every once in awhile they will get into the 2.xx range but mostly hang out in the higher 3.xx. Platelets are consistently hovering around 100k with a low so far of 88k. I haven't had a cbc for a few months though. It is my opinion that something has changed since then, I'll find out at the next appointment.

One concern is that monocytes are always over 20% of the differential. The actual count is always .9 or 1. Never enough to trigger a bigger concern but right at the edge of "normal".

Splenic sequestration is a suspicion but of course why? Just because or because it's destroying abnormal blood cells? The reticulocytosis and marrow hyperplasia indicates the marrow is doing it's best to keep up, no haptoglobin and slightly elevated unconjugated bilirubin means red cells are being destroyed but so far all of the various hemolytic anemia testing and flow cytometry has come back inconclusive.

I'm pretty sure I'm going to request the bmb, maybe even before the next appointment. My recent increase in spleen pain and discomfort have to be happening for a reason.

Thanks,
Bruce
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