Help is on the way! I discovered MPN Voice back in mid Jan. I was actually thinking a platelet count of 760 was ok, since I had no symptom

[BrookTownsend375]

Hunter and many others urged me to get help. By the time I did platelets were 913. I am being followed by Hem/Oncology, having venesections for 6 weeks, and of course, feel great. The happy news is that at your urging, my dear friends, I will be seeing an MPN specialist end of April. It takes away the fear of the future. I wouldn't have known how to do it. But its easy--just make an appointment--your records will be sent over. You can see anyone you want in the US. I may be wrong, but I think my Federal Medicare may even cover it--It will be so comforting knowing an expert is in charge if for instance, I need hip surgery. Thanks you guys, feel so indebted.

[EPguy]

You say we can see anyone in the US. When I looked into it, such a consult required being physically in the state the Dr has practice/license, at least for the 1st visit. MD Anderson required a physical presence for all visits.

Have you found a solution to that?

I'm currently good with my Dr but having more options is always nice.

[upham28 in reply to EPguy]

I am in RI and will travel to MA to physically visit the MPN with Mass Gen. Only an hour drive for me. They also do virtual with just blood tests, they review it all and it takes about 10 days.

[hunter5582]

That is great news! Glad to hear that you have arranged for MPN Specialist care. While Medicare plans vary, I have had no trouble at all having my plan pay for both the MPN Specialist and my local hematologist.

FYI - I usually travel for big surgeries to the same hospital (John Hopkins) where my MPN Specialist is based. No matter where, ALWAYS get your MPN Specialist to consult with a treating surgeon abut your specific needs.

FYI2 - If you are doing venesections, do not be surprised if you see a bump up in your platelet levels. This is a normal response to blood loss and also to iron deficiency.. Decreasing the erythrocytosis is worth a bump up in thrombocytosis. Erythrocytosis is a bigger risk factor.

Glad you are still feeing great. PV can present in a more indolent fashion, but we still cannot afford to ignore it. Sounds like you are well on your way to managing the MPN effectively.

All the best.

[Wyebird]

Brilliant news this site was of help. Even though you are now officially a reluctant member of our club. You Seeking help could well have prevented a heart attack or stroke.

[Mostew]

Glad to hear you are doing so well. Long may it last

[Cja1956]

Glad to hear things are looking up for you. I have a Medicare Supplement and it’s really helpful in that you can go to any doctor or hospital that accepts Medicare. I wish you the best on your mpn journey.