anyone feel more burning/numbness when sitting

Hi @sunnyflower, Have you thought about asking one of your specialists/doctors for a referral to Mayo Clinic? You can also call and self refer for an appointment. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Thanks so much John. I just don't know where I would start there. I have good specialists here who went to really good schools but wonder if bc I'm and some of them are in an HMO, if I 'm receiving everything I could be, especially in the way of diagnostics. They are very generous with the baselines but I know I could probably have some more specialized things like labs. I have tons of imaging diagnostics and blood work etc., but most of the labs are Kaiser Permanente's and there are a lot of disqualifiers on the results page about how they test. I just got a path report from some stomach and esophageal Bx's that had quite a few disqualifiers on the prep and testing such as, "not FDA approved" but good enough (not verbatim). I read a book called, "Believe Me" by Yolanda Hadid Foster who was very sick for a very long time and went around the world to renowned Specialists to try different treatments. She spent a fortune and ultimately her illness and all surrounding it, led to divorce from David Foster the very popular music producer. She kept testing negative for Lyme disease in America, but positive in the European blood test. In the book she describes the differences. So this is what gets me to wonder about whether or not an HMO will go the extra mile with Diagnostics. I'm very grateful for the care I have and think it is very good however I know it can be taken to a deeper level. I just don't know if Mayo Clinic does that? I wonder if any of you out there know or have good reference to what your doctors or insurance company would pay for, especially if it's an HMO, compared to the testing that Mayo Clinic doctors will do.

Sorry for the novel and please know how grateful I am for your great help!

I pray that you are doing much better than tolerable today and always. Warmest regards, Sunny (too lazy to type "flower" anymore.

PS: Check out your insurance first to be sure you can go out of network. Unless however you live near one of 3 Mayo Clinics

Hello @sunnyflower. John has provided the starting point and info for you. I recommend having your most hands on , knowledgable Drs who are very involved in your health be the ones to refer you. My experience being referred by my Drs. was that I had been diagnosed already with things Mayo felt I could be treated for by my local Drs. Possibly I was no great mystery and apparently they felt they could not help. Or were too busy to take me on. Perhaps your multiple diagnosis and unique diseases will draw attention for treatment. You've got nothing to lose! Go for it!!
Many well wishes to you,
Rachel

Hi Sunny @sunnyflower, I wished I had some answers for you. It's difficult when specialists and doctors you've seen are not able to provide a diagnosis and treatment that helps. I think that is the reason why a lot of us are learning as much as we can to become better advocates for our own health. I think it's great when we have doctors that will listen and answer questions that we have on getting a diagnosis and treatment. If a doctor is unable to help in that respect, they should be open to offering a referral or helping you get another opinion. I had the opportunity a year ago to listen to Dr Victor Montori who has some really good ideas for how to talk to Doctors and healthcare professionals - https://patientrevolution.org/visit-tools.

It might be worth discussing your symptoms and lack of diagnosis and/or treatment that is helping you with your doctor and seeing if they will give you a referral. Mayo Clinic has a billing and insurance number you can call to get your questions answered -- https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance/accepted-insurance/medicare/more-on-medicare

I think the reason why Mayo Clinic is successful where other healthcare systems may fail is due to Mayo Clinic's multidisciplinary teamwork and patient-centered culture with all of the specialty areas working together with the patient in mind.

Hope you are having a good day.

Great info John! You are certainly a well and wealth of resources! I have the diagnoses and the positive Diagnostics but the specialists keep telling me how out of the box I am and complicated that I am. There still are unanswered and untreated things that should be able to be addressed however. I just can't imagine traveling, I just don't feel good enough. I am in bed most of the time. In and out but can't stay out too long. I guess if I get up the nerve and I'm able to articulate my reasons for wanting to go, then I could move forward with asking for a referral.

We do have the University of Washington here which is a teaching University and I have been seen there when four pathologists could not identify my lung specimens. Then a pulmonology pathologist at the University of Washington and their team diagnose my lung tumors as chemo dectomas. Years later, my pulmonologist reviewed all the testing they had done and found they had made an error and rediagnosed my tumors as Diffuse Minute Meningothelialomatosis. Benign but innumerable in both lungs. Almost nothing in medical literature; maybe 25 cases? Most have one or two large tumors in one lung but I 'm special and I have so many in both lungs that 4 pathologists said they are "innumerable". They keep an eye on them with CT scans.

The pulmonologist I saw at the University of Washington, told me they should not grow in number or size. On my 1 year post biopsy Cat Scan, they had grown both in number and size. But, thanks be to God, not since then. I will probably have another CT scan soon but they don't like to do so many of them and I am already glowing in the dark with all of the nuclear radiographic Diagnostics I've had over the years! My Bx's also showed asthma and mild emphysema. Go figure! Take care, Sunny

Hi Rachel, my fear is, that one or more of my specialist would wonder why I want to go to Mayo Clinic. I have my positive Diagnostics and a name for most if not all of the diseases and conditions I have, so even though three of them are rare, and my specialist tell me I'm a complicated patient, I think that they would think there's nothing more any other doctor could do. I hope that makes sense to you. I just don't want to compromise the good relationship I have with them and risk them feeling that I don't think they're care is good enough. After working in healthcare for so many years, I do understand that really good doctors do not become offended if patients want a second or third opinion and in fact I have that going on right now with two different neurosurgeons we are Consulting with over my severe canal stenosis surgery. They keep telling me I'm very high-risk for surgery and I have such a poor history of unmanageable post-op pain and healing that I just don't want to face it until I absolutely have to have the decompression surgery. It's just never simple is it?

Thank you very much for your input, it is very much appreciated! Take care, Sunny

@sunnyflower Yes, my goodness you have a complicated situation. My feeling is that any reputable Dr would never refuse to refer you to a bigger medical facility for evaluation or treatment. They may think in their mind and maybe even share their thoughts aloud that "it is what it is" and no more can be done to help or be figured out BUT, they should never hold you back from attempting to prove that to yourself with the best Doctors in the world. Like I said, you've got nothing to lose by asking or trying, as long as insurance coverage is in place.
Regards,
Rachel

Hello Notborntoburn, i have the same problem as you, when i sit or go to bed i feel burning and pins and needle in my legs, last night i was testing the front of my legs with a needle to see if i felt any pain and at the bottom of my ankle i did not feel the needle no pain, i don't understand, i went to the doctor and told me that it's blood circulation but i don't know if really is that or something worse, i appreciate an answer, ty