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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Apr 25 10:43pm | Replies (5972)Comment receiving replies
I am 77 and married for 54 yrs, quite active and overall in pretty good health---however, I have had two cervical spinal discectomies (2001 and 2012) (there is some permanent scarring), and have a chronic nerve pain problem (burning or stinging-like, sometimes just aching) in the chest area (note that back and neck paid is not my problem), which radiates out, and there are neuropathies (e.g. hands); the discomfort is persistent but not constant---e.g. it is not there when I am sleeping and varies in intensity. Have seen a variety of neurologists and pain management specialists over the years plus have tried a variety of the usual pain pills; in addition, I have seen two acupuncturists and did an ayurvedic massage---none of that has worked. The pain problem has gradually gotten worse over the years, but nobody has been able to pinpoint either the cause or any helpful treatment. Cardiologist says my heart is OK---I do regular, including vigorous exercise, without any additional problem (do a lot of walking, hiking [did a 14er near Leadville last summer and a 5k run in Sept.], bicycling, swimming & some jogging). This pain does affect my quality of life, but although I am somewhat resigned to living with it, I would prefer to do better because it interrupts my routines. Have had MRI's periodically (last one about 2 yrs ago) but they never show significant additional deterioration of cervical spine. I am also still trying to find a neurologist who can help me---the last one had me try pills that didn't work and the prior one told me frankly that there was nothing that he could do for me. I am open to any suggestions as to a path forward. Thanks, John
Replies to "I am 77 and married for 54 yrs, quite active and overall in pretty good health---however,..."
Helpful thoughts, John, thanks; I am considering seeking appt with Mayo neurologist in Jax, but which one? (I have seen their roster; there seem to be several whose focus might relate, but maybe somebody at the clinic could review my case and direct me (?))
Hi John @juancs -- is there a possibility that you can have one of your doctors contact Mayo Clinic Jacksonville on your behalf to setup an appointment? I'm not sure of the procedures but I'm tagging @colleenyoung our Director who may have a suggestion on how to go about setting up an appointment at the Mayo Clinic Florida location. Colleen do you have any suggestions for John @juancs ?
hi @juancs, my apologies for the late reply. If you contact Mayo Clinic, Jacksonville, they will review your case and recommend the best suited specialist. Keep in mind that all the specialists at Mayo Clinic work together as a team. While you will have a main point physician, care decisions are made as a team, this includes specialists at all 3 campuses. Here is the contact information for Mayo Clinic mayocl.in/1mtmR63
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Hello John @juancs -- welcome to Connect. Thank you for sharing your health story and background. It sounds like you have seen a lot of different doctors and specialists and you are doing a good job at being your own advocate. You mentioned that none of the doctors or specialists you've seen has been able to pin down a diagnosis. I'm not sure if it's a possibility for you but Mayo Clinic is really good at diagnosing hard to diagnose health related problems with their team of specialists approach. If you would like to seek help from Mayo Clinic, please call one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:
-- https://www.mayoclinic.org/appointments
You might also be interested in a TED Talk - What happens when you have a disease doctors can't diagnose by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.
-- https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose
John