idiosyncratic axonal neuropathy
Translation: Your nervous system is degenerating from the inside and we don't know why.
Damage is moving its way inward from my hands and feet. I've lost some ability on the guitar but I'm learning work-around so I can still play.
No diabetes, no auto immune disorders.
I have constant pain.
One neurologists' s prognosis was that I'd be paralyzed in 20 years. That was over a year ago. Then he told me to find a better neurologist.
I am done spending time and money on doctors. I've been working with a nutritionist. An anti-inflammatory diet has slowed the pace of the accumulating nerve damage somewhat.
I've been working with a massage therapist who has shown me some posture and positioning things that can help reduce extreme pain to a livable level sometimes.
Anyone have any experience with anything like this?
= new reply since forum marked as read
Haven't been here in a while but I've been posting in the Sanders group lately and I thought I'd drop in.
but who knows.
but I'd guess that your weight, sleep apnea, and other things have nothing to do with this nerve thing. I hope you can eventually find, if not a cure, something that slows or mitigates the progress.
And healing energy to you....that sounds perfectly dreadful...
Ask your holistic person about the possibility of vitamin B-12 and alpha lipoic acid, which are both important for the nerves. Also most people are tragically low in D3, which is necessary for hundreds of body processes, including nerves. And overwhelm your gut with good bacteria as well. (maybe you know all this already)
Anyway, best of luck and keep playing!
no experience with it, but have you been tested for lyme disease? neuropathies are very common with lymes.
also, did they test for diabetes via glucose tolerance or A1C? impaired glucose tolerance can be a better indicator of peripheral neuropathy.
how is your thyroid function? hypothyroidism impairs circulation, which can starve peripheral nerves.
did they test your vitamin B6 and 12 levels?
re: the car accident -- that certainly could be a cause. I had a bad car accident. Within 3 months, my normally extremely regular period became very irregular. I would periodically get a numb spot in my spine. Years later, I met with a sacro-cranial therapist to work on my horse and me. While we were standing there, she reached around behind me and pressed the sometimes numb vertebrae into place. While she was working on me, she asked if I'd been in a car accident and told me my car was hit on the front passenger side (I slid into a telephone pole, which ended up next to me in the passenger seat). She said my spine was torqued by the accident and that was interfering with circulation. Within 6 weeks of the session, my period returned to normal.
So it wouldn't hurt if you can find a sacro-cranial therapist. Similar work as chiropractic, but gentler ime.
I would try different types of toxin cleansing. Have you been tested for heavy metals?
I use coffee enemas occasionally just for the detox. I also bought one of those Ionic foot baths and use it occasionally. I know there are people who say it is a scam but my physician cousin bought one for my aunt when she had breast cancer and she is fine now. It is not a matter of making the water turn brown. It is a matter of absorbing negative ions, (I think) because they help in ridding of toxins.
There are also plenty of supplements and fasting that you could use.
I wish all the best for you in your recovery. You can and will do it.
