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.

No, my knee pain is from femoralpatellar syndrome (both knees) and some hyperextension, I've had it since I was 13 or so, at least ... basically a deficiency in the ammount and strength of the supporting cartilage aroud the kneecap; it comes and goes, hasnt been too bad lately, or maybe it's jsut that with the constant foot pain, I hardly notice the knees anymore


... that's exactly how I've been feeling, especialy after going to the foot doc, getting the neoropathy dx, reading up about it, and then having my hopes for relief from the prednisone / Lyrica, come to nothing much, so far ... like my life is doomed ... that maybe it's my karmic fate, "chickens coming home to roost", etc ... paying for my past, and some would say present, excesses ... (but what about all the folks here, who havent done ANYTHING "selfdestructive", or at least, not intentionally?)

... I can be an extremely, EXTREMELY stubborn person ... I have also been through much of my life, a chronic drop-out / quitter ... so it can work either way, for better or worse: I can stubbornly jump to the front of the line for quitting or giving up, no matter who is telling me not to ... or I can get jsut as stubborn about NOT giving up on something, if I really want it bad enough ... I guess we'll jsut have to see, how that plays out with the PN ...

... Life tests and challenges us all, if it didn't, it wouldn't be Life, I guess ... as far as the "telling myself that my life is doomed", well, I'm trying to fight it, that's why I'm here ...

I'm so glad you've already been getting these responses! Sometimes weekends can slow up a bit here and I was afraid you'd think no one cares......
I have such a 'sneaking suspicion' that if you measure these early posts of yours to say..... a few months from now.....you're gonna be absolutely amazed.
Not sure what I mean by that.......just positive 'vibes' I guess

The knee thing. That's probably neither here nor there...the reason I asked is because my PN battle started out 5 yrs ago with piercing knee pain......so instinctively all my attention and medical testing centered around thinking there was something 'wrong' with my knees. My knees are fine. It's the nerves stemming from my lumbar plexus that were referring the pain there and ultimately consuming both the entire legs.
And being hyPOthyroid played a factor in several things which contributed to my battle. I'm female, and at our age.....well..... varying doctors are naturally gonna 'assume' our 'ouches' are 'in our heads' or relating to menopausal cr@p......
......I'm not even sure if you are male or female (how embarrassing) ,
some of what I'm sharing may or may not interest you in the least.

At first I was labeled Fibromyalgia..... ? ...... and to be honest (this is just ME talking tho) the "Neurologist" experience ended up being my most expensive and regretted move....! Point being, maybe don't pin all your hope on thinking a Neuro is gonna be your saving grace.
As far as I'm concerned several folks here have been MUCH more helpful than some of the 'specialty Drs'........ Glenntaj & MrsD (and others) IMO have a better understanding than all the Drs put together that I went to!
Of course, no one here tries to 'play doctor'...... but what I'm saying is that I went in circles and got nowhere.
Before you DO seek out a certain doctor make sure UP FRONT they are willing to commit to knowing/understanding PN and if not, hopefully they will be honest in saying they aren't that well-versed in PN and refer you elsewhere.

And as far as the 'lifestyle choices/habits'........
you'd be surprised to know that there are many here who are/were in the same boat to one extent or another.......Some are more open about it than others..... I saw your comment on the "karmic fate" thing and certainly dont' want you brow-beating yourself.....if that were the case I'm sure most of us would have black and blue brows
There's a real good discussion down a ways on the threads regarding alcohol-related neuropathy......people open up about other habits as well.
And that is just a more recent discussion. Using the 'search' feature at the top of the page is a very useful tool.....type in key words and you'll get a bunch of posts from discussions in the past.....

Oh yeah, you mentioned something regarding obtaining your medical records....YES!!! GET THEM! They are YOURS and you should have copies of what has or has not been done/tested.

Later, my friend
Rae