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anyone feel more burning/numbness when sitting

Neuropathy | Last Active: Nov 16, 2020 | Replies (177)

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@johnbishop

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.

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Replies to "Hi Sunny @sunnyflower, I wished I had some answers for you. It's difficult when specialists and..."

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