Definitely not failure....just wading through the expectations!

Wide-O...SC thinks we are hot!! :o

I mean our friends....drat.

Oh yeah....it's the 2nd!! <smacks head>

2345 days sober.

I am getting a referral from my Doctor to start rehab (geared to neuropathy) very soon. I had a consult and I am determined to be "normal" again. I will fill you in later once I get the details on what it entails :)

It's freaking cold here in Virginia (-8C) and I am ready for spring....

Bitter zero degree weather here as well and suppose to get even colder later in week with possible snow! I will take this any day over the heat. I am a cold weather chickie.
Yes, keep us informed as to this rehab program. I have heard some believe they have gotten a degree of improvement with acupuncture so I have given that some consideration.

We are seeing the beginning of a serious storm (serious for our region) today - 125km/h wind gusts. Weather is a bit weird, NYE was 13°C (about 13 degrees more than usual...), also with lots of wind; many fire works had been cancelled by fire departments.

Going to do my round to inspect stuff that may fly around.

Wow, 125 km/h is serious wind - I hope that you stay safe.

Stay safe, reminds me of my storm front the other week and me having to secure the house on my own lol. Like I had help previous (not). Hope all will be safe and little damage. Friend of mine posted results of wind in London last night, massive tree snapped right off about 60cm from the ground downed right beside her little car.

The local news posted a video from Ireland showing the weather! Yikes!

Yeah, I think we are getting the remains of that coming over the Channel. Reminds me: when we had just bought our house, we had an incredible rain storm. Half of Belgium was under water. Unknown to us, our house is slightly elevated (11 meters above sea level) where all the rest around us is 9 meters. We were one of the few streets that were not flooded. Talk about having a lucky break... Took us 9 hours to get home from Brussels though (40km), not knowing if the whole place would be flooded or not. :eek:

The weather in the States and globally seems so extreme these days. Perhaps there is something to this climate change and it is far more than a political football.

Typical me... I was seeing the end of the storm, not the beginning. I was so tired last night I slept right through it. :rolleyes: Lots of damage in the country, but nothing here in the house or garden. Phew.

Mental note: don't try to do 2 days worth of physical work in 1 day. ;)

Oh, and I admit I have stayed skeptical - waiting for more information mainly - for a long time, but whatever the politics or the cause: the weather is pretty funky lately, it's hard to ignore the facts. We had storms in November we usually never have. We had 39°C days in summer where usually getting a few days to 30 is exceptional. It's not so much the "warming" I notice, but the seasons being totally out of whack.

I took a picture of this rose... yesterday. January 2nd. That's the first time I see that in 55 years, so yeah... This is 2 weeks after having 20 cm snow fall. Usually our roses die in October, not bloom at end of December.

Attachment 10137

How is this for wonky? Right now @ 330pm EST in VA it is barely above freezing and no snow.

300 miles south of me in Myrtle Beach it's a few degrees colder and snowing. It's above freezing and beautiful in Anchorage, Alaska!!

We are all going to die....

It was nice knowing you folks! :(

But hey, at least we'll die sober, and not acting like an idiot, puking, or fighting a monster hangover! ;)

Wonder if we could sell that to a movie company?

Hmmm. Dunno. Would be a smash for sure. We'd get filthy rich. Red carpets etc etc. Not sure I want that LOL! :D

But it would make for a cool scenario though... and somehow, the sober ones would get their act together, and survive/rebuild the world. (and then die at the end because some forgotten nukes self-exploded heheh. Hey, you need to keep the audience amused! ;) ).

Now that's a positive way to start the New Year.......

While it is true I am not getting any worse I certainly am not improving. Today I am couch bound and every simple thing takes much effort so easier just to stay put. I can push through the pain/discomfort and it is actually helpful to keep busy and my mind occupied but it is the weakness that is very limiting and down right crippling.

There is a commercial for fibromyalgia, likely for the drug Lyrica. The woman says that to the outside world she appears "normal" but they are unaware of how she suffers. I can relate. I never speak about PN to anyone because other than a strange gait one would never know how bad I always feel. This week alone I have turned down two invitations to get out and the third one is too important and so I will try and just have to hope I am having a better day or can push through with mind over matter.

I have decided meds for this won't be helpful as I can tolerate the burning and crazy firing nerves but it is the weakness that brings me to my knees quite literally. It is my understanding that there is no medication for that. Perhaps antidepressants would be a better way to go. My mental state is very dependent on my PN and what I am able to do on a given day. Perhaps if I could maintain a better attitude I could be more accepting of my limitations.

In the interim I am hoping time will help and perhaps Icehouse will post some encouraging news on his therapy program.

When I am this low I want to drink to be able to fly away for a bit but I won't. That is what has brought me to this pathetic existence and I only wish I smartened up earlier.

I felt so much better after posting. Funny how that works.

I have my first appointment on Wednesday and will be sure to fill the group in on what is covered, what tests will be done, what the recommendations are and what insurance will cover!

Glad you feel better though with a little "opening up". :)

As for me, on a more positive note, a recent scan of my liver shows that my fatty or alcoholic liver shows reversal and blood tests show the enzymes are now within normal limits. As bad as PN is it could always be worse.

Yup, I only had fatty liver too, and after 6 months it was 100% healthy again. Livers are funny mysterious things. Even docs don't know all it's functions, but it's a very very important organ. Fatty liver is not so much alcohol as sugar (well, glucose) related BTW (alcohol is fermented sugar). 6 year old kids living on orange juice and sodas have fatty livers these days...
The liver can't process the excess glucose and starts to store it. That's why it gets "fatter".

It gets bad when there is scarring. Yours will be like new, so yes, that is good news (and again, you are being impatient. ;) )

Pain is one thing, but as Icehouse showed: with time, from wheelchair to cane to walking without too much trouble. So that will get better too, but that's at 6 years, not 6 months. That's 12 times the sober time you have, so you have a lot of time still to improve. Not saying that to belittle your 6 months, heavens no! But to put it into perspective. You have about 9% of his sober time. It will go in small steps, but it will happen.

And yes, as you noticed: talk about it. Writing it out helps. Knowing that people will read it, will recognize and understand, helps.

Icehouse, I hope that your therapy group goes well.

SecondChances, that is good about your liver. I think that, as always, Wide-O has offered you wise thoughts. Please keep posting here - we are all here for you.

Icehouse, best of luck tomorrow. I am looking forward to hearing how it went.

Well, I have high hopes of finding out what tests can be done, what is causing my stagnation and such, BUT, I have been told that I have to pay near $2K before insurance will kick in....

!@#$%

So, I am not sure what help I will actually get as the price will be too high to take full advantage.

One step at a time and I will fill you all in tomorrow afternoon.

I know it's easy for me to say, but please... stay skeptical before splashing out 2K.

Can you ask about reference customers, testimonials, at least a vague description of the science behind it, anything. If you PM me the name of the company or treatment, I can have some snooping around.

I mean, it's not impossible, but if there are really cures out there that will regenerate nerve growth at the periphery of our bodies (that is the only real "cure"), it somehow would have made a big splash in medical journals. Because all those millions of diabetics would also go: "wait a minute now!" It's very different from finding ways of managing/blocking pain.

Not trying to put you off, but I just know how I AM, and I usually make mistakes so other people don't have to. ;)

Again, for you it will be motor nerves, different case from mine, so I have to put a caution to my caution if you know what I mean. I seem to have 100% control over them - for my age I mean - I can dance, I can walk quite some distances without any visible waggling or strange motion, even "runway type" walking. For me it's purely pain and (lack of) sensation (although still enough to know where my feet are...) There are many types of PN, (and even more causes) which makes it sometimes hard to compare notes.

Eyes wide open!!

Yes, I have no pain, but I lack the fine motor skills. I think specialized PT may help which is what the meeting tomorrow is about.

Well if it's PT it could theoretically work - as the brain may adapt through exercise and learn to slightly change it's "commands" to the muscles based on the information it gets from the (damaged) motor and (intact) sensory nerves. But then I'm assuming quite a few and quite intense sessions, perhaps over a long period. It would literally alter the working of your brain in that department, which is something I know they *can* do. A sort of re-calibration. Like learning to breathe again when you hyperventilate.

Interested to find out more in any case!

PT for Icehouse!
 

Well, it turns that I am one of there more "interesting" cases as my PN is only motor skills related, and not pain. Normally they are married. I did all kinds of tests and I am basically a 7\10. I passed the strength tests but absolutely failed the balance tests and had the therapist scratching his head. So, once insurance is notified then I will start an eight week PT regime at the facility coupled with exercises that I will need to do at home (or office). The therapist was quite intrigued and seems very optimistic that I could be running and back to "normal" by summer. There is even talk of a special spa like treatment included hot water and electricity....that could be fun!

So, in a nutshell, I am positive about this!

Oh wow!!! Excellent news! OK, so I have both the pain AND the balance and weakness issues. So you are saying therapists can help with the latter but not pain?

I am 99% sure they can help with both, but that is why they find my case unique...the no pain thing.

That is really great Icehouse :).

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.

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. ;)

Interesting. This fits right in what we are discussing.

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

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.

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".

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.

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.....

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!!!

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.

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).

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! :grouphug:

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.....