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Wed May 6, 2015, 09:05 PM

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?

21 replies, 3564 views

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Arrow 21 replies Author Time Post
Reply idiosyncratic axonal neuropathy (Original post)
rbnyc May 2015 OP
elleng May 2015 #1
rbnyc May 2015 #2
elleng May 2015 #3
rbnyc May 2015 #4
elleng May 2015 #5
SheilaT May 2015 #6
rbnyc May 2015 #7
SheilaT May 2015 #8
rbnyc May 2015 #11
arikara May 2015 #14
moonbeam23 May 2015 #9
rbnyc May 2015 #10
magical thyme May 2015 #12
rbnyc May 2015 #15
japple May 2015 #13
rbnyc May 2015 #16
japple May 2015 #20
PumpkinAle May 2015 #17
Maraya1969 May 2015 #18
rbnyc May 2015 #19
Maraya1969 May 2015 #21

Response to rbnyc (Original post)

Wed May 6, 2015, 09:23 PM

1. Oh GOODNESS, rbnyc!

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Response to elleng (Reply #1)

Wed May 6, 2015, 10:03 PM

2. hi

Haven't been here in a while but I've been posting in the Sanders group lately and I thought I'd drop in.

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Response to rbnyc (Reply #2)

Wed May 6, 2015, 10:08 PM

3. Good to see you,

but sorry it's on this subject. I've been in Martin O'Malley group.

Have you posted about this in 'Health?'

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Response to elleng (Reply #3)

Wed May 6, 2015, 10:35 PM

4. No...

...Just here.

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Response to rbnyc (Reply #4)

Wed May 6, 2015, 10:37 PM

5. There MIGHT be some info/knowledge there,

but who knows.

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Response to rbnyc (Original post)

Thu May 7, 2015, 03:35 PM

6. Oh, my. Sounds like a rather nasty sort of thing.

 

I will say it almost sounds like an auto-immune disorder of the nervous system, although it's apparently not classified as such.

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Response to SheilaT (Reply #6)

Thu May 7, 2015, 09:02 PM

7. So what's happening to my nervous system...

...is theoretically being caused by some disease system, except I test negative for everything. It's great to know that I'm so healthy, except in the meantime, my nerves are dying.

I am overweight. I have sleep apnea, but I use CPAP. I did have a spinal injury, and multiple pelvic fractures and some other fractures in a car accident. That was 12 years ago, but I feel like all my health problems started then.

I haven't tried acupuncture yet. Nor have I gone to a chiropractor.

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Response to rbnyc (Reply #7)

Fri May 8, 2015, 12:17 AM

8. Not that I'm an expert,

 

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.

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Response to SheilaT (Reply #8)

Fri May 8, 2015, 02:29 PM

11. thanks

I think it may have to do with the spinal injury. But the Wright doesn't help.

I'm trying.

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Response to rbnyc (Reply #7)

Fri May 8, 2015, 09:56 PM

14. I've had remarkably good luck with acupuncture

But like any practitioner you need to find the right one. Word of mouth is the best for that, there are a lot of poorly trained ones out there now since it's become more accepted in the west.

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Response to rbnyc (Original post)

Fri May 8, 2015, 01:25 AM

9. Good that you have a nutritionist

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!

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Response to moonbeam23 (Reply #9)

Fri May 8, 2015, 02:28 PM

10. Thank you.

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Response to rbnyc (Original post)

Fri May 8, 2015, 03:54 PM

12. idiosyncratic?...or idiopathic?

 

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.

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Response to magical thyme (Reply #12)

Mon May 11, 2015, 08:02 PM

15. he said idiosyncratic

Thanks for sharing your story. I see some parallels.

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Response to rbnyc (Original post)

Fri May 8, 2015, 05:47 PM

13. So sorry that you've been hit with this. Have you tried a naturopath?

I don't have any expertise and am not a medical practitioner, but have been reading a lot lately about how all of us are deficient in magnesium because the soil that our food is grown in has been depleted of magnesium as well as other nutrients. Commercial fertilizers are not very effective in replacing all that has been lost from our soil. There are many recent articles about the importance of it in our diets and I'm sure if you google it, you'll find plenty. Dr. Oz has good information.

I hope you find something that will help. Sending positive energies~~~

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Response to japple (Reply #13)

Mon May 11, 2015, 08:05 PM

16. I've been trying to eat high magnesium foods...

...But as you say, the soil is depleted.

My son has Tourettes Syndrome which has been linked to magnesium deficiency as well.

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Response to rbnyc (Reply #16)

Wed May 13, 2015, 05:22 PM

20. A friend gave me some magnesium flakess that need to be dissolved in distilled water

and then sprayed on the skin after bathing/showering. It is supposed to be the best method for absorption, but it also causes itching in some people. I have started taking the brand "CALM" and have noticed that I do sleep better. It is from www.naturalvitality.com

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Response to rbnyc (Original post)

Tue May 12, 2015, 12:08 AM

17. Listen to this from NPR

For Headaches, A Lifestyle Change May Be Better Than A Doctor Visit
May 11, 2015 Each year more than 12 million Americans go to the doctor because of severe, chronic headaches. Many are sent for expensive tests. Researchers say all this testing isn't doing people much good.

http://www.npr.org/sections/health/#

So sorry to hear about your illness. May be this story can help you.

Namaste.

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Response to rbnyc (Original post)

Wed May 13, 2015, 08:36 AM

18. I really think a lot of these "different" diseases or conditions are the result of toxins

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.

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Response to Maraya1969 (Reply #18)

Wed May 13, 2015, 10:58 AM

19. I eat a lot if fish

It's so sad. You try to be healthy but everything is poison.

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Response to rbnyc (Reply #19)

Fri May 15, 2015, 08:33 AM

21. I read you should eat wild caught fish because they have less toxins

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