Your platelet levels are very modest at this time and I don’t believe that having a BMB is a “do or die” option. I would go first for a hematologist you have confidence in.

The MPN specialist community is truly very small, and I, personally, in nearly 24 years have never seen one. I have an experienced hematologist who has provided excellent care.

It would seem to me you would be entitled to a second opinion, at least, and if you are not confident in the hematologist you are seeing you should ask to see someone else.

That said, obtain copies of all test results, ask questions about anything you don’t understand and write down the answers.

All the best to you.

I can't believe that your GP would take you off his patient list just for going to a walk in. Its incidents like this that aren't really publicized regarding the Canadian medical system. The silver lining if there is one is at least you are not with a physician that lacks the empathy one would expect in the profession. Horrifying that even with an MPN that some compassion couldn't be demonstrated.

I also find that with some physicians including specialists that they are very polite but I find that they are still not sincere. My original GP since birth who despite some faults would advocate for his patients. One waiting in the waiting room could hear him advocating for patients seeking a referral to a specialist. Whereas the one I have now is more about referring you to anyone that will accept you regardless of their reputation. There is almost a sense of that no one is priveleged and should not expect a referral to a well known sought after specialist. My argument was that if I completed the research and read up on a specialist who has completed research trials, if it makes me more comfortable to work with that specialist what's the harm.

I always suspected this. The Canadian health system is great until you get something serious.

I have had a Bone Marrow Biopsy to confirm everything and to see what is happening inside. Is there any evidence of scaring/fiberous tissue that can block oxygen production etc.
It is hard to find an MPN Specialist. I have one while I am here in Germany but at the end of the day the Hematologist is just as knowledgeable.
I also find that my MPN Specialist is very kind, but doesn't really want to answer too many questions regarding blood work levels that I see as being above normal.
She is caring for people with serious Cancers and I feel like I am taking up too much of her time.
My platelets have been going up from 420 to 820 in two years.
Only on aspirin, we are on a wait and watch.
Best of luck, as finding any doctors in Ontario is a challenge. I had one, then went to the Walk in Clinic and I was tossed off his patient list and I am now on a 2,000 plus person waiting list when I am at home in Ontario.
They did not care that I now have an MPN and would not add me to the previous patient list.
xo