Primary Myelofibrosis: so unsure of everything, need answers

@eloise999
I've had PMF for a year (Hydroxy 1,000mg/day) after platelets at 1.4 million and have the same problem with my teeth. I recently had 3 stents places in my widowmaker artery. My knees are shot and the one replacement knee has been recalled for replacement but I'm not fixing anything while focused on the PMF. Platelets now ~650

Good morning, @irkiesling. First, let me welcome you to Mayo Connect. I promise you won’t feel neglected or forgotten here! As you can see, you’ve already received some wonderful, helpful replies from @eloise999 and @mjbulte and I’m sure there will be more to come.

Having a 2nd opinion on your health with a larger teaching hospital associated with a university or research clinic would be a good option for you to start. It’s never too late and certainly not ridiculous. We have to be our own health advocates and keep pushing as long as it takes to get answers! Unfortunately, if you’re in an area that doesn’t have many doctors or clinic options it really becomes a challenge. As in cases like yours, you may at least get a confirmed diagnosis and treatment plan, which may then be carried out closer to home. That way you wouldn’t necessarily have to move to seek treatment. My local oncologist works closely with my Mayo team.

If you’d like to be seen at a Mayo Clinic campus in
Rochester, MN Phoenix AZ or Jacksonville Fl, here is a link to the website for to request an appointment. http://mayocl.in/1mtmR63
Click on that link and follow the prompts for the appointment request. You don’t need a referral but I’ve heard that it can be helpful.

Also, Mayo partners with certain clinics in the US which meet the Mayo standards of professionalism. Here is a map outlining the Mayo Network Members. Hopefully there is one near you: https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members

And one more item. You wondered if there are any resources to assist in relocating or moving cost. This is a good site for you to visit!

Read more about Aunt Bertha's navigator. It’s a program to help people find free or low cost programs and services to find assistance with things like food, transportation, medical care and more, share this URL with members: https://myhelpnavigator.auntbertha.com/

Try it out. Enter your zip code to find services in your area in the United States.

Do you have a family health doctor/general practitioner? Often these doctor’s can assist you with referrals and certainly can address your high Cholestrol.
I’m also not understanding why you’re not able to get dental healthcare. If your teeth are noticeably cracking and you’re losing teeth, that is a concern which any good dentist would be trying to correct. I worked in the dental field for 30+ years so this is an area dear to my heart. Have you received a professional checkup and cleaning recently, with X-rays to check your bone support?

@jtcat7
thank you for commenting.
I have to say that although hydroxyurea really did a number on me, horrible ulcers in my mouth and down my throat and the thinning of my hair and then the spontaneous teeth cracking if I put all of those unpleasantries aside it took my platelet count from 17 million down to 786. when I was diagnosed I had blood clots in my brain,my heart, both kidneys, my liver and my spleen. so I'm extremely grateful, truly I am. once they had my counts right that doctor left and I was sent somewhere new. I came to her prepared with all of my research and we landed on Jakafi. I tolerate it much better but the damage is already done. do you get migraines by chance. this is something new for me.

@dorothea58 I claim those blessings dear. thank you so much for that enormous spiritual hug. I guess I really needed some love thrown at me. today is better though. thanks again

@lrkiesling
It sounds like you really had a run on Hydroxy side-effects. WOW.
Your platelets were 17 million??? I'm not surprised that you had clots.
Sounds like you're doing much better now.
No headaches here.