Breathing difficulties

[Ethicalthinker]

From last 2 years, I'm facing blood disorder my red blood cells increases every month along with subtypes and HB, I have wasted my blood almost 12 bottles of blood in 1 year my bone marrow biopsy, and all other reports are normal but still, I'm facing difficulty in breathing firstly there was a problem in red blood cells but now my white blood cells are also increasing doctor is also not able to find the real reason of that issue because all the major reports are normal but still the issue is there! Can someone guide me on what can I do now!

Kind regards,

[Bluetop]

Sorry to hear you have not got a diagnosis. Is your Dr an MPN specialist? You can find a list on this site. Because these are rare diseases, many doctors will not have come across them before. Good luck with finding the answer you need.

[hunter5582]

Definitely arrange to see a MPN Specialist. Here is a list of patient-recommended docs with this expertise mpnforum.com/list-hem./ . MPNs are rare and there are even more rare variants of them. you need a doc with the right KSAs.

You did not mention your diagnosis, but with erythrocytosis and leukocytosis present, sounds like some form of Polycythemia. You did not mention platelets, which is the third cell line that can be elevated. There are some triple negative myeloproliferative neoplasms that may be what you are dealing with. All we can do is guess at this. Your best course of action is to consult with a MPN expert doc who can get to the bottom of this.

You did not mention any meds. Some meds do have dyspnea (shortness of breath) as a side effect. Likewise some forms of MPNs with this symptom. There is a lot of variability in how our MPNs present. We do not all fit the "normal" pattern nor do we all benefit equally from the standard treatment protocol. Finding a doc with the expertise to provide an individualized treatment plan will be the key to dealing with all this.

Hope you get answers soon.