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Old 01-10-2018, 05:53 PM #111
SecondChances SecondChances is offline
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So happy to hear this! Now you need to get the insurance approval and begin the work! Hope all goes well on both counts. Also like we have been saying...." Keep your expectations realistic".
So I have a couple questions. Is this a neurologist or some kind a doctor, chiropractor or rehab facility? There are a few neuropathy centers around here but they don't take insurance and seem more like alternative medicine type of clinics and physical therapy doesn't even seem to be part of the process. I am very happy for you. I am so excited to think there is hope.
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Old 01-11-2018, 02:01 AM #112
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Quote:
Originally Posted by Icehouse View Post
I am 99% sure they can help with both, but that is why they find my case unique...the no pain thing.
That one had puzzled me from the beginning of your first messages too. The way I understood PN (and the people I know or met) it's usually sensory first, motor skill "second", joining in a a later stage. Having only motor skill problems is indeed rare.

On the other hand, I can't explain how I can walk without any visible problems without properly feeling where my feet "are". Try knitting with a sleeping arm for instance.

Of course, not all feeling is gone, and that became clear when they gave me an epidural a few weeks back. Then you really feel how awful it is to have no feeling at all from your legs. It was scary even - although I knew it was just for another 10 minutes. Yet, even though I should not have been able to feel *anything* at that time, I did still feel some tingle from the place that usually hurts most. Part of the whole PN thing is in the brain, not just the physical nerves - is my guess.

(think of people with phantom pains in limbs that were amputated long ago... my buddy in collage had his full leg amputated at 17 after a motorcycle accident, yet he sometimes complained about pain or itches in his toes - which freaked me out at the time! I even thought he was making fun of me.)

And in some way your situation sounds more easily "curable". Fingers crossed!

Edit: I do hope they do the water & electricity thing at separate times.
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Old 01-11-2018, 02:58 AM #113
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Interesting. This fits right in what we are discussing.

Sorry for the french, but I'll translate/summarize.

Quote:
Cela fait des années que les scientifiques tentent de comprendre avec précision les causes des acouphènes chroniques. Bien qu’il s’agisse d’un « problème mécanique » de l’oreille (qui peut être dû à une maladie), les recherches ont pu démontrer que cela est très probablement lié à l’activité cérébrale, en particulier parmi les cellules fusiformes qui nous aident à déterminer l’origine du bruit et à éliminer le bruit de fond.
This is the link through Google Translate:

Google Translate

Basically, the comparison is apt. Although tinnitus originates from physical damage - the condition is then caused by the brain reacting to that damage with producing its own sounds. (ringing, hissing, both or one or alternate ears) I have it too, and it's again stress influenced, is sometimes less, then comes back with a vengeance etc.

A mechanical problem (ears/nerves in our extremities) as the cause but the brain adding to the problem (by inventing sound or inventing pain from parts that are not physically actually in pain (!).

They managed to find how this works (finally), for tinnitus at least, and are experimenting with stimulating parts of the brain that could "reset" this.

Quote:
Originally Posted by Susan Shore
" The brain, specifically the brainstem region called the dorsal cochlear nucleus, is the root of tinnitus, " said Susan Shore, professor at the University of Michigan Health System and head of the team. research. " When the main neurons in this region, called fusiform cells, become hyperactive and synchronize with each other, the ghost signal is transmitted to other centers where perception occurs ," she continues. " If we can stop these signals, we can stop tinnitus. This is what we are trying to do with our approach, and we are encouraged by the initial parallel results in animals and humans, "she adds.
I'll try to find an original English article later today. The original research can be found here: Auditory-somatosensory Stimulation to Alleviate Tinnitus - Full Text View - ClinicalTrials.gov

I can easily see a similar solution for the PN pains we feel. "My toe feels like it's being clipped off by pliers and then set on fire" says brain. But the toe is perfectly fine (although you should do your nails! ) so the solution is to make the brain "behave", not to "make up problems".
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Old 01-11-2018, 04:06 AM #114
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That is great news, Icehouse! You are so inspiring! Here is my update. I had been getting decompression of the spine and laser treatment done several months ago (to the tune of over $6000). I had never had my back or neck "cracked" (adjusted) so I started doing that with a different chiropractor a few weeks ago. I was suspicious that the decompression doctor wouldn't show me my x-rays so I had them done by the second chiropractor. They were confirmed - my lowest (pelvic) vertebrae is basically bone-on-bone. So my neuropathy could be unrelated to my history of alcohol abuse. He said that it would have had to been pretty bad trauma to the spine (if it was an old aging thing, all of my vertebrae would be affected, which they are not) --- and he asked me if I had been in a car accident or something similar, which I have not, ever in my life. I did have an incident of abuse that I won't elaborate on here, back in 2006/2007. It sure was eye-opening, and I addressed it with the abuser, who doesn't recall the incident at all, but at this point I don't care. I am continuing decompression with the first chiro and adjustments with the second chiro, feeling some tingling in my feet, and hopefully something good comes of this. Still faithfully taking the vitamins and hoping for the best, we shall see.
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Old 01-11-2018, 09:05 AM #115
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Quote:
Originally Posted by SecondChances View Post
Is this a neurologist or some kind a doctor, chiropractor or rehab facility?
This is a rehab centre, brand new in my City. I happen to know a few people that have been there and they all have good words about it, so I am taking a chance.

The only downfall is I have to pay out-of-pocket about $2000 before my insurance covers its 70% so I will have to be frugal for a couple months

This may be hard as I like my prime rib and oysters on a half shell.....
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Old 01-11-2018, 09:10 AM #116
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Quote:
Originally Posted by Wide-O View Post
That one had puzzled me from the beginning of your first messages too. The way I understood PN (and the people I know or met) it's usually sensory first, motor skill "second", joining in a a later stage. Having only motor skill problems is indeed rare.
See, I have thought the same thing, even 2nd guessed my self re: the PN thing as you ALL have the pain and I do not. I feel so left out....

But, the the Doc in 2011 said PN and the therapist said PN yesterday while he was scratching his head.....lol

Phantom limb has always intrigued me too. I know a guy in Canada that lost his arm in a snowmobiling accident and the "itching" was just plain irritating...

Talk about an itch you can't scratch!!!
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Old 01-11-2018, 09:10 AM #117
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Quote:
Originally Posted by Wide-O View Post
That one had puzzled me from the beginning of your first messages too. The way I understood PN (and the people I know or met) it's usually sensory first, motor skill "second", joining in a a later stage.
That is exactly how it all went down with me. I had so many warnings, I knew what was happening yet the more I worried the more I drank. It defies logic but the alcoholic mind is not logical. I WILL confess that last night when reading Icehouse's good news I thought "Oh goody, now I can get fixed and drink more". Ugh... fortunately it was just a very fleeting thought but that is how my crazy head still thinks.
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Old 01-11-2018, 09:16 AM #118
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We are already on page 12 of the Alcoholic Neuropathy Part 2 thread. How cool is that? This is a wonderful support and I am always so glad to know you all are out there. If there are any lurkers please join in. (I lurked for years while drinking but was too ashamed to post).
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Old 01-11-2018, 09:31 AM #119
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Quote:
Originally Posted by Icehouse View Post
This is a rehab centre, brand new in my City. I happen to know a few people that have been there and they all have good words about it, so I am taking a chance.
In the past I have been to rehab and a doctor writes the script and the PT does the therapy. So how does this work? Is a doctor over seeing this process and if so what is his specialty?

This is all very exciting. We are all rooting for you!

Last edited by SecondChances; 01-11-2018 at 09:32 AM. Reason: sp error
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Old 01-11-2018, 09:40 AM #120
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Quote:
Originally Posted by SecondChances View Post
In the past I have been to rehab and a doctor writes the script and the PT does the therapy. So how does this work? Is a doctor over seeing this process and if so what is his specialty?
I like to live in a perpetual grey area....keeps my life interesting.

I skipped the Doctor part (sort of) by calling the rehab centre first and they told me I needed a "referral". So, I dropped by the Doc office and told the cute receptionist about my request. I also told her how I have been ignored by the Doc regarding my PN issues (totally true) and she wrote the referral on the spot and faxed it over. My Doc may find out about it...but that will most likely be after I switch primaries and go with a new guy in town.

This is one of the downfalls to healthcare in the USA. It sucks. It's days like this where I miss my Canadian healthcare (I still have it, but I am not a resident so it's a little more complicated) but I have no plans on moving back north.....
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