mikee
@mikee
@mikee
Posts: 28
Joined: Nov 30, 2016
Fibromyalgia and autonomic peripheral neuropathy
I was first diagnosed with fibromyalgia in 1985 and autonomic peripheral neuropathy in 2005.
I read an article in JAMA or Lancet the said individuals with autoimmune diseases often have endocrinological disorders. I went to an endocrinologist who had read the same article. He performed tests that showed a growth on my adrenal glands, fortunately benign but affecting functionality.
steeldove
@steeldove
@steeldove
Posts: 126
Joined: Jul 31, 2017
@parus Sorry that you’ve had problems with Humana, and I hope you’ll be ready to jump on the change back to Medicare on the first day it’s available. My small fiber neuropathy was diagnosed at Mayo last January, and I’m trying to find out if anyone at Mayo is working with Dr. Oaklander or if anyone at Mayo is doing cutting edge research on small fiber polyneuropathy. If not, I’ll bite the bullet and fly to Boston…even though I moved to Missouri from Massachusetts just weeks ago!
Liked by John, Volunteer Mentor
Parus
@parus
@parus
Posts: 2156
Joined: Jul 14, 2017
Darlia
@darlia
@darlia
Posts: 133
Joined: Jul 21, 2017
@steeldove @parus Sorry that you’ve had problems with Humana, and I hope you’ll be ready to jump on the change back to Medicare on the first day it’s available. My small fiber neuropathy was diagnosed at Mayo last January, and I’m trying to find out if anyone at Mayo is working with Dr. Oaklander or if anyone at Mayo is doing cutting edge research on small fiber polyneuropathy. If not, I’ll bite the bullet and fly to Boston…even though I moved to Missouri from Massachusetts just weeks ago!
I am in the process of deciding between a referral to St. Luke’s in KC and The University of Iowa hospital. I’ve heard and read that Iowa is very very good. I live in NE Missouri so either way it’s a drive. Any recommendations out there from Mayo Connect friends on which would be best?
Many autoimmune disorders and fibro is one of them, including Peripheral Neuropathy with FGFR3 ANTIBODY.
DARLIA
brdl
@rlinstrot
@rlinstrot
Posts: 7
Joined: May 17, 2017
steeldove
@steeldove
@steeldove
Posts: 126
Joined: Jul 31, 2017
@rlinstrot Do you have a link to the article you mentioned?
@rinstrot, go to this website http://www.neuropathycommons.org where you can read articles and view discussions under the Media tab. Dr. Oaklander is doing cutting edge research on small fiber neuropathy and fibomyalgia.
steeldove
@steeldove
@steeldove
Posts: 126
Joined: Jul 31, 2017
@rlinstrot Do you have a link to the article you mentioned?
@rlinstrot go to this website http://www.neuropathycommons.org where you can read articles and view discussions under the Media tab. Dr. Oaklander is doing cutting edge research on small fiber neuropathy and fibomyalgia.
steeldove
@steeldove
@steeldove
Posts: 126
Joined: Jul 31, 2017
@steeldove @parus Sorry that you’ve had problems with Humana, and I hope you’ll be ready to jump on the change back to Medicare on the first day it’s available. My small fiber neuropathy was diagnosed at Mayo last January, and I’m trying to find out if anyone at Mayo is working with Dr. Oaklander or if anyone at Mayo is doing cutting edge research on small fiber polyneuropathy. If not, I’ll bite the bullet and fly to Boston…even though I moved to Missouri from Massachusetts just weeks ago!
@darlia If you haven’t yet made a decision about KC or Iowa, check out Dr. Glen Lopate at Washington University School of Medicine. He’s part of http://www.neuropathycommons with Dr. Louise Oaklander.
brdl
@rlinstrot
@rlinstrot
Posts: 7
Joined: May 17, 2017
brdl
@rlinstrot
@rlinstrot
Posts: 7
Joined: May 17, 2017
@parus
@steeldove A Humana Representative bumped out my Medicare ( I was on Medicare) and I am currently w/o a secondary. Most doctors in this area pooh-pooh Fibromyalgia. The meds used for this mess w/ my psyche and, of course, I am making it all up. I can get back on Medicare in October. There is a window where insurance can be changed. Humana has been doing this-never trust anyone is becoming my mantra. And, do not sign on a laptop!!!!! What next?
Yes, my humor is gone as there is nothing that helps but to try and keep busy to distract myself. Needing sleep and anyone w/ neuropathy or any kind of chronic pain understands how lack of sleep intensifies everything.