← Return to Primary Myelofibrosis: so unsure of everything, need answers

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Profile picture for Lori, Volunteer Mentor @loribmt

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?

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Replies to "Good morning, @irkiesling. First, let me welcome you to Mayo Connect. I promise you won’t feel..."

@loribmt
wowie! Many thanks for all that wonderful information and links to resources. I'm going to check that out immediately. I do have a dentist now that is willing to discuss the treatment plan for me but we have one dentist in town that accepts my insurance and the original dentist, the one who was afraid to treat me he said. has since left and I am working with his replacement. not quite sure how it's going to work out though. but again I wanted to thank you for welcoming me and the information and the kind words have been so touching. best regards