I have been reading some threads here and I,m sure there are five hundred similar threads here to this one, but Im not sure where to start, so ...


Well ... I started going to see a foot doctor a couple of months ago (a Board Certified Foot Surgeon ... his name is Doctor Fish ... witch I found instantly intriguing, since Fish have no feet ... usually ), bcos of pain in my feet. I was pretty sure I had Plantar's Fasciitis, since a lot fo the pain was in my heels, and after several x-rays and a brief consultation, the Doc confirmed this ... he put me on prednisone for two weeks, said that "should give me some relief". Upon my return for my second appointment I informed him truthfully, it had not. I also repeated to him that in addition to the heel pain, I had pain all along the bottoms of my feet, everywhere except the arches.

He then asked me a few more questions, and based on what I answered, specifically about my history with alcohol, he casually informed me he thought I had something called "alcoholic neuropathy", explained to me in general terms, what this meant, and gave me Lyrica, in a low dosage (75 mg, once a day, at night). He also had me get some blood work, to determine if I am diabetic, etc.

On the third visit I informed him, that the 75 mg Lyrica, hadnt helped much, and he upped it to 125 mg, 2x a day. He also told me that based on my blood work, I am NOT diabetic, and that my liver function, among toher things, was fine ... He also said that although he still suspected alcohol toxicity as the cause of my neuropathy, the cause couldnt really be determined without a battery of (expensive) tests (I dont have any insurance), and even then, it might not be clear, so officially, I had an "idiopathic" neuropathy ... I started to tell him that it was bad enough, telling me I was neurotic, pathetic, and alcoholic, without calling me an idiot, on the top of it, but he wisked me out the door ... before he did, he told me that if the Lyrica seemed to be helping, he was planning to switch me to Neurontin, witch was a cheaper. but similar alternative, not FDA-approved, since it was actually developed to treat something else ...

On the FOURTH visit (two days ago), I again informed him, that teh increased dosage of Lyrica still didnt seem to be helping much, with the qualifier thrown in that my on-my-feet demands at work had increased significatly, and therefour I was putting even more stress on my feet. At this point Doctor Fish practically threw his fins in the air (well, he shrugged), and said that if the Lyrica wasn't helping much at that dosage, there may not be much point in switching to Neurontin, and so I left without any meds, or Rx, at all ...

... now, Im wondering if some here will even accept this Doc's dx as valid, since I havent been seen by a neurologist, nor had a battery of expensive tests ... but from everything I've read so far about PN, here and elsewear, it sounds like exactly what I have: I describe the feeling to my Doc as a simultaneose sensation, somwhere between tingling, pins&needles, and the bottom of my feet feeling like they are on fire ... I also frequently have a sensation that feels like my toes are sprained or broken, although I know they arent ... the foot Doc's Dx, as written on his request for my blood work, also mentioned something about "fibromatosis", Im not sure what that is ...

... as far as the alcohol diagnosis, I did start drinking heavily when I was about 17, I am now 45 ... although my drinking tapered off gradually over the last fifteen years or so, and I do not consider myself an alcoholic, I do still drink alcohol, frequently but rarely to what I consider "excess", though I understand, that's all relative ... the Doc told me, the best medical advice is to stop drinking completely, and if unable ro unwilling to do so, to cut back as much as possible, and Im willing to work on option # 2, at least ... but I get the feeling that the prevailing wisdom here is that PN and alcohol use, PERIOD, do not mix, so to speak, and if Im not willing to give it up altogether, it means Im not serious about treating my neuropathy ... if so, I want to hear it, from the folks who know ...

... I'm kind of regretting walking out the door without at least asking to try the Neurontin, the Doc says to try without for a week or two, then let him know what I think ... as I see from reading others' post here, it can be very tricky trying to tell weather the medication isnt working, or the pain is jsut getting worse ...

I have been reading about the vitamin deficiency issues and supplements, Im already taking B-12, B-Complex, Magnsium, Calcium and Zinc, will try thiamin ... also wondering if anyone can tell me anything about using Hyaluronic Acid to treat this, I have a freind at work who has Shingles, and she swears by the stuff, but I dont know ... h-e-e-e-e-e-e-l-P!

... my limited understanding of neuropathy, from my Doc, and an online medical encyclopedia called MEdlinePlus, is that it is a permanent, incurable, progressive condition ... so by my understanding, once you have it, you can never go back to NOT having it ... and it is only a matter of managing the symptoms and the pain, as far as treatment, and trying to prevent it from getting a lot worse ... but that it does tend to always get worse over time, and not better ... though from what I've read here so far, it seems like some are saying that may not always be the case ... anyway, my feet hurt pretty much all the time now, and it IS getting worse steadily since it started about three months ago, and is already to a point, that it is making me more than jsut a bit miserable ... I've had knee pain for years, upper back pain, even some arthritis, but never anything as miserymaking as this ... so, I guess I'm in the club?

We've already 'bonded' over on the "Intros" Forum, so I just wanted to stop by and say HELLO! and THANK YOU for sharing your story!
So much to say, but my brain is shutting down for the nite!
I'm so glad you've found this forum and you'll soon see that you are by no means sailing on a lone ship!
We're all in this 'together' and you'll get much support and friendship here!

We are both about the same age and a couple of things jumped out at me as I read your post.......just curious about the 'knee pain' you speak of. Can you describe it as a constant 'burning' pain that radiates outward?
Also, knowing that you probably don't want to jump right into thousands and thousands of dollars of medical testing......but, do you happen to know what your thyroid levels are? I had NO idea how vital our thyroid is until AFTER I had spent thousands of $ on tests from A to Z........and in hindsight wish I would have known my thyroid was LOW from the beginning........

Don't feel 'doomed'.......there IS HOPE........check out the little section at the top of the page called 'stickies'......especially the one entitled "Neuropathy CAN improve".......
Reading your post, I see you've already got a pretty good 'jump-start' by reading thru a lot of the posts and you've already got a good grasp on how important certain supplements are in playing a role in improving symptoms....

Think positive......there ARE ways to get a better quality of life. Please don't fall in the same trap I did by letting your conscience try to convince you that your life has been doomed.....

You'll get lots of good feedback.........I'm happy for you that you've found this forum........!
You'll see

Rae

It is great to have you here. You are among like-minded people: those who won't give up looking for answers, and are willing to share their own experiences. There is no sense in taking PN lying down. Tho there are some days that seems all one can do.

I found NT about 2 months ago, and immediately felt at home. I can see you already feel the same.

I'm curious about your treatment for Plantar's Fasciitis. Did your doctor recommend a heel cup? I had it in one foot a couple of years ago. I tried the gel cups - forget them. Didn't see the doctor about it specifically, but it's onset coincided with one of my semi-annual visits to the Rheumy. He suggested a rigid heel cup. The idea is to get the pad of the heel lifted up so pressure is not being put on it with every step. Gel cups/inserts just don't do that.

You won't find a rigid heel cup in a store. I finally found one over the internet. I can't find the one I have, but this one is similar:

http://www.orthopedicquestions.com/o...amondbacks.htm

There is a cut-out for the heel pad so all the weight is put on the outer surface of the heel.

Dr. Scholls has a semi-rigid heel cup that also works well. I used it until I found the rigid suport over the internet. You can buy it in most stores:

http://www.cvs.com/CVSApp/catalog/sh...ump&navCount=3

I used the heel cups for about 2 months, and the PF went away completely - never to return!

Again, welcome to NT.

Hi and sorry you are going down this road.

I get help from the stong magnets and Salon Pas patches. I apply them at night and they seem to quiet the nerve endings. Both are inexpensive - a box of the patches runs about 5 bucks and the magnets can be had for less than a buck each (get high gauss mags - find them online).

I can understand the doc's reluctance to prescribe Neurontin if the Lyrica isn't working - although they are different drugs, they aren't that far apart in effect; the Lyrica tends to be stronger, from what I have read. Neurontin, however, can be obtained in the generic form - maybe worth a shot.

If you can rethink your approach to alcohol at all, it could make a big difference. I have spoken to some different docs, one at a large teaching hospital, who told me neuropathy due to alcohol can reverse if one quits ingesting it.

Good luck with all of it!

This is true in a sense. You will probably always have it, yet sometimes it can be controled, and yes,the alcohol should go. Continuing to drink is like feeding the monster. When you have any condition/disease, you have to do all you can to stop what caused the issue, then you work forward. My snesory neuropathy was caused by gluten. Now, if I continued to eat gluten, not only would my neuropathy get worse, so would everything else. The gluten doesn't just attack the nerves, it attacks everything in my body. I have never beena drinker, but I can't imagine that giving up alcohol could be any more difficult than giving up all the foods I have lost to intolerance's. I know alcohol and nicotine are addictions, but, for a gluten intolerant/celiac, gluten is an addition too...we want it, our bodies think they need it, we crave it so much. People can live without alcohol and nicotine, but you can not live without food. I think first and foremost, you need to stop the drinking, a little can hurt.

It is a matter of managing the symptoms and the pain. I take 5000mcg daily of B12, and it has significantly slowed the progression. For now, I do not take anything for pain, and hopefully can continue on this path for some time. Meds are scary for a gluten intolerant, so many contain low levels of gluten.

Stick with this group and you will get suggestions on how best to move forward. Good luck.

--as to whether "alcoholic neuropathy" is caused by the effect of alchohol on the nerves themselves, or whether the prime mechanism is nutritional deficiency; heavy drinkers tend to get certain vitamins/minerals leeched from them in the process of metabolizing alcohol, and if one does not have a great diet to begin with, or has some genetic difficulties in nutrient utilization (more common than most doctors think), one can get neuropathy from lack of vitamins (especially the B's) or mineral imbalances.

If nothing else, though, there are some reports of people with neuropathy thought to stem from alcohol arresting, or even reversing, the course somewhat if they stop drinking and systematically start dosing with large amounts of essential nutrients. Everyone is individual, and much may depend on the extent of the damage, but peripheral nerves can regenerate given the right conditions, though said regeneration may be patchy or incomplete.

I realize you don't have a lot of money for testing right now, but if you can get some done at some point, you should drive the protocol--nerve studies of your feet and legs should be done, which might include qualitative sensory testing--if you have primarily small fiber damage at this point, standard EMG/NCV testing won't reveal it. I think you're on the right track with supplementation--most of us recommend high doses of methylcobalamin B12, along with 25-50mg ranges of other B's (with perhaps a bit more thiamine and niacin), considerably more Vitamin D than "standard" ranges indicate (2000 IU and up daily for those who don't work in the sun), calcium/magnesium in roughly a 2:1 ratio (and not magnesium oxide, which is not appreciably absorbed by the body), and perhaps alpha lipoic/R-lipoic acid, Acetyl-l-carnitine, coenzyme Q10 (this last one is particularly important for mitochondrial problems--and many heavy drinkers show mitochondrial damage). This can get expensive, we know--so often some one-at-a-time experimentation is in order for these.

I would hope at some point you can get a complete work-up (including vitamin/mineral measures) at a competent neurology practice that specialize in neuropathy (not all neuros are very well versed in it).

To everybody who replied ... magnets, patches, and supplements, oh my!

Seriously, I appreciate greatly each and every suggestion or comment. I am "listening" attentively to all, and will investigate every lead. Will check into the "high gauss" magnets and patches, as well as the supplements mentioned. I do want to see a neurologist and have some testing done (this may have to wait until I can get some insurance, if possible) to confirm the dx and find out what my thyroid and vitamin levels are, etc. Thyroid importance duly noted, Rae My foot doc was going over some levels with me based on my blood work, some of it wnet in and out the other ear, can I request a printed copy of that? (I mean, it is "my" information, right? Right?) Not sure if he talked about thyroid, but he mighta done ...

Looks like I will need to significantly up my dosage of B-12; I must have caught a secret signal from you all, since I recently ordered ten bottles of the stuff ... I've never been much of a vitamin or supplement person, but that is changing and now of course, more so than ever: I started taking B-Complex and B-12 about a year ago, for chronic fatigue / eggshaustion, witch has improved quite a bit ...

I will read the stickies and try to ABSORB some more info, and I will probably be posting more questions soon ... for anybody who has time to check back here, your continued support and help is greatly appreciated.

I wish none of us had to be in this club, but I can already see the spirit of caring, cameraderie and support that is here ... thanks so much for welcoming the new kid on the block!

Darlindeb25: "I take 5000mcg daily of B12, and it has significantly slowed the progression."

How can you tell (a) the progression has been significantly slowed and (b) the slowing was due to B12?

I've increased my B12 to 2000 mcg now, but am also "playing around" {my PT's directions} with the TENS unit. So I have 2 variables in play that I can control. Meanwhile, I seem to be more reactive to rain storms. And yet -- some days pain doesn't go above 5, others it knocks hard on 8's door. Overall, I can see the steady progression -- I long for the days I had a slight tingling in my toes... sigh. With so many variables, I don't know how to tell which one is responsible for any improvement that might occur.

Thanks for the welcome, the info, and the links. I am now much more concerned at this point about the PN (witch seems to be definitely getting worse), than the PF (witch seems to be improving slightly), but I will definitely check out the rigid (or semi-rigid) heel cups!

... well, I think it was the salacious and catchy title I used to reel 'em in ... old show-biz trick ... then no matter how tired, boring, seen-it-a-million-times the material is, you hope the customer will be too enbarrassed ro lazy, to ask for their fifty cents back ...


Im not sure Im sure what you meant either ... but I'll take all the + vibes I can get


... see, I dont even know a lumbar plexus from a lumber jack, Im such a dummy ... when you say "consuming both the entire legs", do you "jsut" mean that the entirety of both legs are in pain? Or have you lsot the use of them altogether, I sure hope not ... but in reading about the worst outcomes or progression of PN, it mentions loss of muscle control and mobility ...

... no reason for embarrassment, but I'm a rootin, tootin Texas cow-Boy, Ma'am (half Cow, half Boy, that is)... these genderneutral screennames sure can leave one in a quandary about such things, at times ... I have at least one female freind who ocasionaly starts to tell me (in context of talking about her overall health, or issues thereof) about some of her "menopausal cr@p", and I'm jsut like "uh-huh ... oh ... OK ... well, sorry ... " ... what else can I say?


... well, I appreciate the input and advice, I'm jsut trying to get my bearings here, and it seems like a bit of a minefield at times ... if you dont step on a mine, you fall in a quicksand, and then there are the R.O.U.S. to worry about ... (some think they don't exist) ... maybe a neurologist wont do me much good, and Im sure one who doesnt understnad PN wont, but I'm thinking along the lines that if I do have PN (and I seem to have it), I might be better off gravitating away from the foot specialist (the only doctor who is currently treating em ro "seeing" me), and towards someone who maybe can deal better with the neuropathy and with my health issues as a whole, including the vaitamin and nutritional deficeincies, etc ... I mean, my foot Doc can prescribe Lyrica, neurontin, or anything else I could talk him into, but he gets paid to think about feet all day, not "the whole person" (maybe I am kidding myself, that there are actualy doctors out there, who do this?)


eh ... dont worry, I dont beat myself up past teh point, wear it isnt fun anymore ... the "karma / fate" point of view makes for an easy rationalization too, I supose, for saying This si the rotten hand I was dealt, I should just give up, drink myself to death, etc ...


I had read some fo that thread befour I posted here, and I have read all of it now ... I did think about "telling my story" there as my first post in the forum, but I kind of wanted to avoid having alcohol use being the main focus of discussion for replies or comments ... and not "jsut" bcos of wanting to avoid dealing with the issue at all, but bocs I want to get a grounding in or understading of PN, period and in general, FIRST .. I understand that the alcohol issue is not something I can jsut ignore in this context, (at least, not without consequences), but I need to get my head around the whole idea of having PN, whatever the causes and /or exacerbating factors ... what it really is, what it really means for me going forward, what my choices and options are for treating and managing the condition, INCLUDING "managing" or stopping my alcohol intake (and other habits) ... does this make any sense to anybody, or does it sound like I am jsut avoiding ... bcos I will honestly admit, the alcohol part of it, is not going to be easy for me, and I am not sure I will be "ready, willing and able" at this point, to give it up completely ... not bcos I cant, but bcos I dont WANT to ... and I understand, I think, what a serious dilemma this potentialy is for me, I'm not oblivious to that or "blowing it off" ... maybe I jsut need soem time to get my head around it, maybe it will take the symptoms and the pain getting worse over time, to knock some sense into my thick head, I dunno ... but Im sure I will be posting on that thread or on that subject, if anybody has the patience or tolearance to bear with me ...



... I will make it so, my freind ...