New Here - recent diagnoses FOLLOWUP POST

[Jaffar21342]

Following up here after some great advise and kind words to calm my fears after recent test result showed that I was Jak 2 positive.

As expected, I was diagnosed with ET by local Hematologist. We spoke at length and it was decided I would not be placed on any medication at all, including aspirin until either my platelets cross the 1Mil threshold, or I reach advanced age.

I was told that no BMB is needed either at this time.

However, when explaining how I now understood the reason for my aura migraines and fatigue, the local Hematologist said those aren’t symptoms of ET. When I followed up with my research from multiple medical sites and sources, she was still fairly certain they are not symptoms of the disease.

While I believe she has my best interest in mind, this conversation alone was enough to reaffirm the need to see an MPN specialist. I let her know I was hoping to expand my care team and she was happy to offer a referral and work side by side with a specialist.

Now I wait for the appt to be scheduled and hopefully get some more answers at Mass General in Boston.

[hunter5582]

That sounds like an excellent plan. Most hematologists just do not have the KSAs to provide optimal MPN care. You already know that headaches/migraine most certainly can be ET-related symptom. The data on this is very clear.

It is an outstanding plan to have a local hematologist to provide ongoing care and a MPN Specialist to guide the care plan. This is how I manage my MPN care. It is great that you found a local doc who is willing to put your best interests ahead of her ego. This sort of collaborative care team provides optimal care.

Congratulations on setting up an outstanding plan to move forward.

[Cja1956]

You’re definitely making the right decision. Fatigue is the number one complaint for people who have a mpn. Also before I got diagnosed with ET jak 2 in 2008 it was during a routine visit because I was having terrible headaches for months with no relief. My gp took my blood and my platelets were about 600. After a second blood test, he referred me to a hematologist who diagnosed me. He immediately put me on hydroxyurea and soon after my headaches disappeared. Sorry for the long story but I wanted to share my experience. You’re on the right path.Take care.

[Hopetohelp]

Good luck. You made the right move

[Meatloaf9]

Excellent plan. Best to you.