Gelatinous Bone Marrow

[mdb1986]

Hello Everyone:

Has anyone experienced gelatinous degeneration of their bone marrow? I'm still trying to find out what is going on. Very low white counts (well, they are around 1000 - which to me is low). Most everything is low, but whites are the most. My hematologist doesn't seem too concerned - more of a watch and wait kind of approach. This concerns me, because it's the same thing that doctors did with my liver, and now that is basically destroyed.

What's odd is it feels like my bone marrow is freezing. Very odd. I don't know how else to describe it. I read an article about gelatinous degeneration due to chronic malnutrition - which I've experienced due to my liver condition - and it sure seems right. How would I tell if that is indeed what is going on with my marrow. Bone marrow biopsy? Or would an MRI show something like that? If anyone has any experience with that, would be greatly appreciated.

[Neil Cuadra]

You might search for information using some of the alternate names described in this article:

Gelatinous degeneration is generally diagnosed in bone marrow biopsy specimens by the presence of a focal or generalized extracellular deposition of a gelatinous material, identified as hyaluronic acid, in association with fat atrophy and marrow hypoplasia. This disorder has been referred as serous atrophy, mucoid degeneration and starvation marrow.

I also see reference to the phrase gelatinous transformation.

[mdb1986]

Thanks. Yes, definitely had searched some. Was wondering if anyone had this condition and if yes, the symptoms they had and how they were diagnosed. It seems BMB is the method of diagnosis, but may also be possible via MRI - at least so it seems. It is so odd, but it feels like the marrow in my bones is "hardening" - don't know how else to describe it.

[curlygirl]

Hello, I'm sure it can certainly happen. I remembered reading this article at the time, http://www.cnn.com/2013/10/11/health...los/index.html. My son's Aplastic Anemia was set off by a nasty upper respiratory virus. In this case the man got the flu and an acute bacterial infection, which led to his lungs failing, which in turn also caused his liver and bone marrow to begin to fail. I remember it because it was published in OCT 2013 (not so long ago), soon after my son was diagnosed. Here is an excerpt.:

"It all began in December with a bad bout of the flu that led to an acute bacterial infection. By the time he checked into the hospital, Carlos was barely hanging on.

"We walked into the triage, and his oxygen level was only 57%, and everybody turned a corner," Carlos' wife, Brenda Voglewede, told CNN. Healthy blood oxygen levels are higher than 95%.

Carlos was in deep trouble. He had developed acute respiratory distress syndrome, also known as ARDS. It was slowly killing Carlos by attacking his lungs.

"Not only that, but he had multiple organ failure related to the infection. So his kidneys were not working. His liver was not working. And his bone marrow was failing as well," said Dr. Ashok Babu, a cardiothoracic surgeon at the University of Colorado Hospital."

So it is definitely possible that your bone marrow problems are in relation to your liver problems, which may be caused by the same mechanism. But it's not encouraging that you feel worse and seem to be getting worse instead of better.

I think a bone marrow biopsy is definitely in order. I don't know if they would decide to do the ATG if they decide that you do have Aplastic Anemia - ATG is hard on the liver. But they have other drugs, for example Cyclophosphamide, which is used in both low and high doses for a whole range of autoimmune disorders. I would like you to find some answers. I found your other thread about your liver issue and your bone marrow failure after this one (although you posted the other first) and you shouldn't feel this way, I want you to feel better. Also, if you feel better after rest, yes, my belief is that you should definitely not try to push yourself so hard, go on disability if you need to, and rest. Disability is there for a reason, hardworking people should take it if they need to.

[Chirley]

I don't know if they use MRI much for diagnostic reasons in bone marrow disorders, however, I know from experience that MRIs can show some bone marrow changes. I've had numerous MRIs for other reasons and they all mention "empty marrow" or "sparse marrow" and the last one showed "regenerative deposits". I've never heard of any haematologist using this for diagnosis...bone marrow biopsy is the gold standard.

[mdb1986]

I certainly appreciate the kind words. I really don't want to go on disability. Work provides structure to my life, and gives me a sense of purpose and worth. I guess it does for everyone. I've been working from home due this illness for the past almost 4 years. I know I couldn't hack it if I couldn't do that. But I don't know. I have days where I wonder if I will wake up the next day. Who knows, maybe I'm not really that sick. I guess you never know how sick you really have to get to die until it happens. Could be that I'm just hypersensitive. But something is wrong. I know my body well enough to know that. Something isn't right.

The response I'm getting from my hematologist is basically, "your neutrophils are more than 200 and you're not experiencing baterial sepsis, so why are you wasting my time?" Similar to the response I got from doctors before I lost my liver.

I am requesting a bone marrow biopsy even though he doesn't want to do one. Though now he's just not returning my calls. Argh - oh well. I'm not perfect. I guess they are not either. At this point, I will just find the tests I want run and ask them for lab orders. If they want to add on top of that, great.

Again, thank you everyone for your kindness.

[Marlene]

Have you looked into a second or even third opinion yet? That's a really low number for your neutrophils. I see why you're concerned.