At my wits end. Not sure where to go from here.

It couldn't hurt to do an assay on your gut biome. That unseen flora is SSSSOOOO important to body function, not least of which is the ability to liberate and to take up nutrients of all kinds through the intestinal walls.

Do you ever use artificial sweeteners? Doesn't matter which, except for pur stevia....they all kill the gut biota.

Do you consume sugar alcohols? I'm gonna say yewbetcha...we all do, but without a clue how much or from what source(s). Sabine Hossenfelder, a youtuber by that name, has her own channel. Just two or three days ago she revealed to the world that she, a world class PhD in physics, has just realized that she is intolerant to sugar alcohols. Further, that they're in so much of what she eats that she was greatly dismayed.

That leaves me tapped out without knowing a great deal more, and since I'm not a PhD in biological medicine, pharmacy, nutrition, or in medicine, you'll be at their mercy for the time being. What does anyone have to lose over a bone marrow biopsy. I think it might be a distinctly unpleasant experience, but knowledge is power.

My husband had crazy blood work, weak legs, bad balance and many tests. Saw 4 neurologists, hematologists and other specialist. He was told he had Parkinson's, and a rare genetic disease CIDP which he was getting monthly transfusions for. After some google research, I came to the conclusion that his strange blood work was due to inflamation that was caused by a leaky gut which was caused by his heavy drinking. We found an Irish neurologist who listened to the amount my husband drank, other doctors dismissed it, and diagnosed distal axonal sensory polyneuropathy which there is no treatment for other than to stop drinking which he did and now, two years later, is fine. I hope this helped...good luck !

Hi: I would find a doctor to do the BMB on you, just to rule out some different causes. When I was diagnosed with CML, I presented with a high WBC, and I just so happened to work for a Oncologist. I went to him, and told him of my concern. He said it could be a number of things, but lets do a BMB to see if it gives me an idea of what is going on. The WBC had been elevated after 3 different blood tests. He did the BMB right away, and it did come back that I had CML. He said the bad news is that you have Leukemia, but the good news is that you have a type that is treatable. I can Thank God for this great doctor, and for the blessings that I am here to tell and share after living with CML for 26 years. Please insist on the BMB, and then go from there.

When I was diagnosed with a blood disorder, and very hi Hemocrit levels, my Hemotologist did a bone marrow biopsy right away. I’m glad he did as I had polycythemia, vera and Jak 2 positive. I think when you first begin it it’s nice to have baseline test to see whether the disease progresses or stays the same. Plus the more they know, the easier it is to diagnose it. Myself, I would have the biopsy, but it’s up to each individual.. I also read everything I can about blood disorders and discuss it with the doctor.

During my experience with AML, one of the things I have learned is that a bone marrow biopsy can provide more information than lab tests on the peripheral blood. The biopsy will be examined by a pathologist. The pathologist will use a variety of techniques to examine the sample. The result will be a detailed report from the pathologist, possibly containing a diagnosis and recommendations for further investigation. Your hematologist can then take the next steps.

I have had five or six bone marrow biopsies. They were done at Johns Hopkins by a Nurse Practitioner who did several per day, so she was highly skilled at the procedure.

Bone Marrow biopsy will give you a far more accurate answer regarding your abnormal blood counts. I was miss diagnosed for over a year. Because of my background in lab medicine, I challenged the heme/ onc doctor. The biopsy read by a pathologist gave an accurate diagnosis. Unfortunately for me, it isn’t curable and only symptoms can be treated. When a biopsy is done, a number of genetic mutations can also be tested from it. Get the full package of testing done on it.
I wish you the best.

Thank you so much for sharing your story with me and giving me advice. I get so frustrated with the doctors sometimes and most don't want to listen to you. My first Hematologist was awesome, and he knew something was going on but unfortunately, he left because he did not agree with what the hospital, he worked for was trying to do. My family physician was the same way. He knew something wasn't adding up and felt something was in fact going on and he did what he could for me with what he could do but unfortunately, he left as well for the same reason that he didn't like how the hospital was trying to do things. I have an appointment to see a new family physician coming up very soon and from what I hear she is good people and actually cares so hopefully she will send me to the right hematologist and ill have answers soon.

I am always so sad to hear stories from people who can't get a firm diagnosis and treatment. If money is no object, I'd say go to a specialty clinic or big university hospital for a consult with a blood specialist. Had a friend whose GP and local hemo kept frogging around with endless monitoring and no answers. After three or four years, she finally asked to go to the University of Michigan, which diagnosed her with CMML on the spot. At last treatment could begin. It's so hard to advocate for yourself when you feel sick and confused, but hoping you can be persistent and get these answers!

Hi: Going to a new doctor can be a good thing. I switched to new primary and new Cardiologist, and I am happy with my choice so far. Sometimes a different doctor is more up on things or has a different approach to get to the bottom of a problem. Try to relax, and just let things fall into place for you. They will figure it all out for you. Have a good day.

Please get the bone marrow biopsy you need those answers. My husband has had at least 5 during his treatment for MDS as bone marrow cancer. We didn’t like the answers but treatable with bone marrow transplant. The biopsy isn’t that bad and can tell you a lot of things. Prayers be with you.