I guess I will separate my life "before PN" and life "after PN":
Five (5) years ago at 64, I was extemely active playing tennis 3-4 times a week and going to the gym 2-3 times each week in addition to my favorite activity; taking care of my grandaughter, the love of my life (after my daughter but different). I went to the doctor, a rheumatologist, to check out some symptoms of RA recurring after quite a long time. My RA factor was high so the treatment began for RA including a steroid pak and daily medication. This was pretty good for a short time but other ailments happened, the worst being what seemed like an electrical storm in my legs and feet. I was diagnosed with Pheriphal Neuroathy and referred me to a neurologist. After some tests, discussion, MRI's, other scans and much time, etc. he confirmed the rheumatologist's diagnosis and said that was all he could do for me.
Meanwhile the pain had reached proportions I could not tolerate. I was taking handfuls of Motrin (up to 20-30 each day) which really didn't reach the pain. We tried various pain medications through the rheumatologist and ended up with Oxycontin. I was referred to a pain doctor to monitor my intake which was 120mg a day (3 @ 40mg). (STOP - MORE LATER)
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You've mentioned many of the things I'm looking for: alternative medicines, treatment etc, sharing information that may help one-another and learning to live with a very invasive disease. I'll be back later today with Part 2 of My Story. Thank you. Linda Nelson
December 4, 2009 - 10:21amThis Comment
Hi,
Thank you for sharing your story, and I look forward to reading "Part 2".
You may be interested in reading some resources about PN, and I hope you will continue updating us on your condition, as well as let us know if you have any specific questions you would like us to help you research.
Resources:
- EmpowHer Encyclopedia: Peripheral Neuropathy
- EmpowHer Conditions: Peripheral Neurophathy
Clinical Trials and Current Research on PN:
- National Institutes of Health (NIH): Peripheral Neuropathy
Are you interested in treatment options, including those in the "complementary and alternative medicine" genre?
As you may already know (from NIH link above): "No medical treatments now exist that can cure inherited peripheral neuropathy. However, there are therapies for many other forms. Any underlying condition is treated first, followed by symptomatic treatment. Peripheral nerves have the ability to regenerate, as long as the nerve cell itself has not been killed. Symptoms often can be controlled, and eliminating the causes of specific forms of neuropathy often can prevent new damage."
This is potentially good news, and depending on the underlying cause of your PN, there may be some effective treatments to relieve your symptoms, including everything from acupuncture to surgery (and many more alternatives in-between).
Hope to hear back from you soon!
December 3, 2009 - 1:10pmThis Comment