so unsure of everything

I am sorry to hear about the challenges to finding treatment. It should be much easier. Do you have the option to see a MPN specialist by telehealth visit? They might be better at helping you find the other specialists you need. I have had a lot of issues with my teeth, I started to see a rheumatologist and found out I have Sjogrens disease (or something that looks like it because I do not have the biomarkers) and have a treatment that is helping. I also see a periodontist now on regular schedule. I have lined up a cardiologist and I am looking for a gastroenterologist. You need a team of specialists to cover all the symptoms. That might be challenging if you live far from healthcare specialists. Moving might make sense or building relationships through telehealth. I hope you find good solutions.

@irkiesling
I live in the Phoenix area and see Dr Chad Cherington at Ironwood Cancer Research Center. He’s outstanding. There are several location for Ironwood and he practices in the Chandler/Mesa locations. If you decide to relocate to the Phoenix area, I highly recommend Dr Cherington.

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?

Hello lrkiesling@lrkiesling. I am so sorry for your feelings of uncertainty. I share your frustration. I am 74, and was diagnosed with ET in 2024 but refused the recommended medication. Then in 2025, following a bone marrow biopsy, my ET with CALR+, but JAK2- was confirmed. My husband was worried about my possibly getting blood clots and a stroke that I finally agreed to take the 500mg hydroxyurea 4X per week. Well, after 6 months, much of my hair fell out, 2 teeth cracked off, and my joints were constantly aching. The ONLY abnormal item in my blood draws were my high platelets (last count 448 on meds, 747 without). So I decided to go off of the medication and am being treated by my acupuncturist and functional medicine therapist. My last count was 700 after taking my prescribed supplements so I am hopeful it will continue to go down. I will meet with my hematologist again in May for further follow up. I eat an anti-inflammatory diet, work out at the gym 5-7 days/week, have low stress in my life (retired, twice!), my Christian faith keeps me grounded, and have 4 young grandchildren that I want to be healthy and active for. But everyone on this site has different reactions to the prescribed medications. Mine happened to be unacceptable for my quality of life. But keep reading what others post on this site to get a better idea of what will work best for you. We are all walking in your shoes! Love to you!

@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

Follow your instincts! Continue to search for solutions. Try the resources that Lori gave you.

My story is different, yet the similar in regards to the medical community with my symptoms PRIOR to seeing a Mayo Clinic Oncology in FL.
Three years of many specialists who dismissed my concerns is discouraging to say the least.
It turns out I have 2 blood cancers, CMML 1 and Myelofibrosis 3+/3.

Two months after seeing Mayo Oncologist, I am waiting on Donor news for a Bone Marrow Transplant as soon as possible.

I wish you the best in your journey.