Shocking True Confessions Of A Neuropathy Newbie
 

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 :D), 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? :)

Hello Dogz!
 

http://dl9.glitter-graphics.net/pub/...gcxerfk5yi.gif

We've already 'bonded' over on the "Intros" Forum, :p 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! :o
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 :grouphug:

Rae

Welcome dogz
 

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.:hug:

There is some controversy--
 

--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).

Many Thanks
 

:)

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 :cool: 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?:confused:) 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 :winky: ... 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.

Dooooooooooomed!!!!!!!!!
 

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 :winky:


... 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...... :p
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..... :rolleyes: 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) :o ,
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....! :eek: 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'........ :grouphug:
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 :rolleyes: I'm sure most of us would have black and blue brows :o
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
:hug:

RSCowboy..this is the general consenus of my neuro and I. When I started taking B12, which was 6 yrs ago, I was still having many symptoms. I started at 1000mcg of the wrong B12, cynacobalomin..this forum led me to the right stuff. Gradually, I increased my dose from 1000, to 3000, then the 5000. My ataxia improved, reflexes improved, the buzzing and vibrations stopped, I generally have gotten stronger. Last appt was in January, and my neuro had my B12 level done, which has finally increased...it had been staying around 1037, it's now 1700, and he feels it is helping, so we are staying with this dose. I see him in about a month..we will see what is going on now.

My problems are malabsorption, so the increase does show improvement.:D

By the way, I wasn't insinuating that the alcohol causes the neuropathy, I know it's malabsorption, which is brought on by the alcohol...stands to reason to me, stopping the alcohol is a step in the right direction!

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!

quotables
 

... 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 ... :winky:


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:p)... 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:p ... 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 ... :p



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

... still up reading ....
 

... and the more I read, the more I feel like I have a lot of "pain dues" to pay, befour I can even be considered worthy to hang out here ... I wish it were not so, for all of you ... (and for me, of course)

I have a couple of questions regarding meds and supplements:


1) it seems to be stressed that only a certain type of B12 be taken (cobalamine?) ... I read that this is bcos with this type, the vitamin dose not have to be transformed by the body, and is more easily absorbed:

"Regular Vitamin B-12 supplements must be converted in the body to Methylcobalamin before they can provide any benefits – Methylcobalamin supplements allow you to bypass this step for quicker absorption

You may not be able to absorb B-12 as well as you get older, so mature adults may especially benefit from a Methylcobalamin supplement"

... so does this mean that the "regular" form of B12 (what Im currently taking) will do little or nothing for me?


2) I have taken ibuprofen in fairly large doses, for years and years, mostly for my (not related to PN) knee pain ... I generally take as much as 2000 mg in the morning, and the same or slightly less at night. I take ibuprofen rather than aceto-etc, bcos the risk of liver and other organ damage is considerably less, or that's what I understand to be the case ... I have also taken naproxen sodium (aleve), but have msotly stuck to the ibuprofen in recent years. When my foot doc gave me the lyrica, I told him about my iboprpfen use, and he recommended that I not take it in conjunction with the Lyrica (but I did it, anyway :o ) ...

- Does anyone have an opinion or know weather the ibuprofen in that amount, may have actualy kept the Lyrica from working as well as it otherwise would have?

- Should I be concerned about the ibuprofen somehow interfering with my body's ability to absorb and / or retain vitamins, minerals and nutrients from supplements and / or food?

... the ibo works pretty well for managing my knee and back pain (and usually takes care of the ocasional headache, as an added bonus of taking it daily), but as far as I can tell, it isnt doing much for my PN pain ... I am kind of dependent on it in terms of jsut being "used to having it there", but if it is problematical in some way, I would be willing to give it up, if there is some reasonable substitute ... I have so much to learn about drug interactions, vitamin absorbtion ... all of it ... in other words, I'm ignerint ... I admit it .

You must be a PNer if ibuprofen does nothing nothing for the pain. That's the hard part of PN - finding the right med, or combination, that works for you. All of us are different, but all have one thing in common - OTC pain meds do absolutely nothing. I think as long as you are taking such large doses of ibuprofen, it will be difficult to determine the effectiveness of any PN med.

There is a thread on the PN forum about magnets. You might want to check it out. I have problems with lower back pain. I tried the magnets and went almost 3 weeks without back pain. I've been wearing one to bed every night, and go through the day pain free. Last night I forgot the magnet, and woke up with back pain this morning. I think the thread even discusses how they can be used for the knees. I bought my magnets over ebay for less than $15. They might be worth a try.

dogz, reading your posts brought back my own fears when I was first diagnosed with PN. I combed the internet and read everything I could find. And, of course, I took away the worst case scenario. I found a series of books that changed my outlook: "Numb toes and aching soles", "Numb toes and other woes" and "Nutrients for Neuroathy". You might want to check them out. The author is John Senneff, and he is a former attorney from your neck of the woods - Austin - who developed PN about 15 years ago.

There are also 2 books by Norman Latov that I have heard good reports about. I haven't read them yet, but you might be interested: "Peripheral Neuropathy: When the Numbness, Weakness, and Pain Won't Stop" and "You Can Cope with Peripheral Neuropathy: 365 Tips for Living a Full Life" Latov is a professor of neurology and Director of the Peripheral Neuropathy Clinical and Research Center at Cornell.

I've enjoyed your posts, and am glad you found us.

Welcome to NeuroTalk. I see that you, dogzRbarkin.... have some complex issues.

Did I see that you have high blood pressure and take meds? (on that intro post?) And you take high dose Ibuprofen? Before addressing any PN issues, we have to look at this dangerous combo.

1) NSAIDs like Ibuprofen block the effects of most blood pressure medications. They are also dangerous to the heart long term. AND may cause a spontaneous bleed in the GI tract.

Here is a sobering article:
http://www.healthsentinel.com/joomla...inal&Itemid=24

2) NSAID use has been shown to cause gluten intolerance. Now this started showing up in studies back in 1999. This basically is caused by the NSAIDs blocking the system in the GI tract that protects us from absorbing peptides before they are digested.
When the gluten peptide goes thru the GI lining into the blood it may cause neuropathies.
http://sites.google.com/site/jccglutenfree/
http://sites.google.com/site/jccglut...eralneuropathy

We have had people here test positive for gluten problems.

Some blood pressure medications deplete nutrients. I'd have to know what you take specifically to look that up for you. But in general diuretics deplete magnesium, and thiamine. And ACE inhibitors deplete zinc. But some of the drugs do not so I need to know specifically what you use for your blood pressure.

Foot doctors are useful for evaluating mechanical issues with the feet. Spurs, neuromas, arch problems, stress fractures etc.
I wouldn't trust them for systemic problems.

Your high dose long term Ibuprofen maybe also masking symptoms coming from your back, which certainly can refer to the feet. And if you have tendon issues in the knee, you can have tendon issues in the ankle too.

So before looking at nutrients, (two of which should be tested for, B12 and Vit D), you need to seriously look at the ibuprofen use.

Dealing with PN you really have to be a detective... and patient.

Thanks, someone else also mentioned the magnets, I will look into that for sure ... also the book recomendations.

I am trying to get a "balanced" view of all this as much as possible, without going full tilt boogie in the "oh, no it's Doomsday" direction, or the "we-can-all-be-Happy-in-Neverland,-if-we-only-Beleive" direction, either one ...

... another thing (it's always somthing:rolleyes:): I started feeling a numbness in my right hand a little while ago, and it scared me momenterily, and then made me think: is is common for PN peeps, especially in the early stages of it, to become hyper"sensitive" or even hypochondriacal about symptoms? I mean, people without PN or any nerve problems, just about everybody, sometimes has parts of their body "go to sleep" temporarily, right? The feeling in my hand retunred to "normal" pretty quickly, and I'm trying to guard against getting paranoid or going off the deep end here ... Im definitely sure I have rather poor blood circulation, so that is one thing ...

I don't want to sound like I'm harping on it, but I have read that PN due to alcohol damage can hit the hands after it hits the feet.

Is your cervical spine ok??

Hi, MrsD, and thanks for the welcome ...
 

Yes, I have HBP, or had it in the past, and still do, as far as I know ... but no, I have not been on ANY medication for this, for the last five or six years ... I was also on a "statin" type drug for high cholestorol, when I was on the BP meds ... let's see ... I WAS taking Metoprolol (generic for Lopressor) for HBP, and Pravastatin (generic for Pravachol), for cholesterol ...(not that it matters now, I guess) ... and it may be almsot seven years now ... when the insurance I had at the time (low-cost, subsidized, sliding-scale) ran out ... well, the right way to put it is, I basically jsut stopped going, and didnt renew, bcos I did not feel satisfied with the level of care I received there (rightly or wrognly), and in all the time since, I have not been under a doctor's care at all, except for a couple of visits to a clinic, until I started to going to my foot doc, earlier this year ... I didnt even keep up with checking my BP, after I stopped going to the doctor ... they told me I would need to be on the BP AND the colesterol meds, "for the rest of my life", or until I no longer had the conditions for them, and yet, I seem to have survived so far, without them ... the tech at the foot doc who took my BP, well, his eyes did not rollup into the back of his head at the reading, like they used to do at the other doc's, so who knows .. I can FEEL it go up significantly, whenever I get very angry, upset, excited, or overexert physically, so I try to avoid all those things.

I read the article about NAISD's, that is indeed pretty "sobering" :winky: ... the only thing I can say in my "defense" of taking the ibuprofen in such quantity, over such a log period of time, is that it hasn't been a "casual" or "irrational" use, in my opinion ... I did start taking them daily, under the advice of a doctor, and I keep taking it, bcos it works, and if I didnt take "something that works", I would have chronic knee pain, sometimes better, sometimes worse ... when you have any kind of pain, and you knwo something that works to relieve it, you want to take it ... I haven't had any adverse reaction or damage from the ibo, THAT I KNOW ABOUT, and my foot doc said that my liver and kidney function was good ... as for heart, well, that was main reason I was going to the doc in the first place (frequent angina), but after almost every noninvasive test they seemed to have, they said they couldnt find anything wrong with it, so i quit going ... the doc did give me an Rx for nitroglycerin pills, and I still have some, but I very rarely feel the need to take them, anymore ... I get a little twinge, every now and then, but that's about all.

I would not be at all surprised if I have ankle tendon issues, since I often feel like I have "pulled" something, jsut above my ankles ...

... if I wanted to have a "vaitamin board", or whatever the test is called that tests for vitamin / nutrient levels, and I have to pay for it out of my own pocket,

1) is it very expensive, and

2) what kind of doctor / lab can do this? a GP? a neurologist? a nutritionist? any blood lab?

Can I jsut go to a blood lab on my own, and ask for a test, without a request from a doctor? :confused:

:eek:

I have no idea ... and I am not trying to be funny here, but I knew I had a spine, or spinal column, period, I didn't know I had a "cervical" spine ... you can see Im in a little over my head here, so take it easy, OK? How would I find out if it is OK, or not? CAT scan, or somthing?

... OK, I am quickly checking some links ... if we are talking "neck" here, I can tell you that it dosent FEEL so good ... tighter than hell, difficult to turn it to either side ...

Well, dogzRbarkin.... you are a complex person.

Statins do cause neuropathy.
NSAIDs do cause heart attacks, in addition to bleeding episodes.

And nitro sublingual expires quickly in the bottle. Once it is opened 6mos tops. If unopened ... one year. So if your nitro is not fresh, it is most likely evaporated away. (nitro leaves the tablets and turns into a gas). Taking ibuprofen with any angina is not a good idea.

If you get out in the sun, but not much, you can start at Vit D 2000IU D3 daily. Without a test, then it is basically a shot in the dark for larger doses.

The B12 you can try, and I would start at 5000mcg methyl form daily, on an empty stomach. But if you are not really low in either of these, taking more will not have much effect.

All the supplements besides these two cost substantial money.
Without some direction, it is difficult at this point to say what you need or would work.

I think it is possible you are gluten intolerant, but testing for that costs money.

So basically without insurance you are in a tough spot.

What you can do is clean up your diet. (lower the amount of carbs and sweets you eat). Take flax oil and fish oil, and some foods now have them added. Neither is that expensive to buy. This might improve your inflammatory pain some. Avoid alcohol.(which is expensive anyway). With less carb/sweets, your pain may improve some. You can try Salonpas patches for your knee pain, instead of ibuprofen. But if your knees are bone on bone with no cartilage, you may not see much improvement with Salonpas. (they don't work on severe cases).

Keep reading here and something may stand out for you to try.

:laugh: ... well, thanks, mrsD ... I think you may be going slightly out of your way, to put that thought nicely ... and I suppose, :I-Agree: ( :paperbag:)

I think it is fair to say, my record in taking care of and ebing responsible for my own health, has been "spotty, at best", so far, but I think we are both trying to share information honestly here, so that can't be a bad thing ... and I will be the first to admit without prompting, I have some "mental health" issues, that have seriously affected the degree to witch I have sought out treatment and care over the years, for both physical and :Crazy 2: "issues" ... but hey, at least I still have a sense of humor about it all :) (and if that wasnt what you meant at all, don't worry ... I'm stepping up to the plate, of my own free will here)

... like I said, I am jsut trying to get my bearings here with this PN thing, so I can plot a course for myself. And I am very appreciative of all the input and advice, and will try to make some changes, large or small, for my own benefit. It is confusing terrain, to be sure, but confusion is nothing new to me. And I promise to read the stickies, before I ask any more foolish questions ... thanks again, for all the advice and guidance.

:You-Rock:

OkeyDokey....

Just so you know, one can now buy "smart" food.

Yes, Omega-3s have never been so easy to get thru food. I sure wish these were available when we started just over a decade ago in our house, to change our diet for health.

http://www.smartbalance.com/

I use the Smart Balance peanut butter. It is as good as any other out there. I've just bought the new milk. And we use the butter substitute spread. And there is a new sour cream! Too bad it is full fat, as I use the reduced fat one by Breakstone.
But when our store gets this I might try it anyway.

There are even chicken nuggets from Canada -- I forget the brand, but available from Costco. My hubby eats those for lunch sometimes, but he threw the box away, and only the ziploc baggie is left in our freezer! But they have Omega-3s in them.

There are Omega-3 eggs now too! Egglands' Best Omega-3!

So one can do Omega-3s pretty well now by just selecting "smart foods".

To address the question about your neck, yes you would need an MRI to see what's going on. I ask because numbness in my hand was my first clue I had a neck problem.

OK< thanks for the info. I will put it on the list, for when I get some insurance coverage ... and best of luck to you also, Swmn.

http://dl4.glitter-graphics.net/pub/...t1kfk1v8hd.gif
Half Cow Half Boy :p What a Hoot!
Your humble honesty and inborn sense of humor is what's gonna be yer savin grace there partner!

AND I think you cut yourself a bit short sometimes!....

I think you are 'smarter' than u give yourself credit for Dogz!!
When I joined this board 6 months ago, I thought B12 was some sort of off-brand shot gun....... :rolleyes:
You've got a pretty darn good grasp on alot of this stuff, so, give credit where credit is due.......
As far as the 'Spinal intimidation'......it's no big deal......
Our Spinal Column is divided into 4 segments.....from top to bottom:
1) Cervical 2) Thoracic 3) Lumbar 4) Sacral

So, when you hear someone talk in terms of spinal issues, there's yer ticket.
So when I said my issues are in the Lumbar spine, that's the lower back basically and the nerves in that region of the spine are the ones that control the lower extremeties.....thus my bilateral (both) leg pain .
You probably already know this and are sitting there with a smart@$$ grin on your face watchin me make an idiot of myself acting like I know something :Clever:

Yes, and you've received a plethera of vital info all at once. This is a fine example of how much people care here!! Don't be intimidated by it......get a nice big ol' notebook, take notes and B4 you know it you will realize that you've become your very own Pain Management Specialist!!

I put myself thru medical school simply by investing in a $4.99 paperback Merck Manual..... :o
No, but really. Unless you've got $ falling out of your pockets, IMO the best way to get a GOOD understanding of what we are battling, is to keep a journal and notes, take to heart what folks share here, jot things down, absorb the info that works/pertains to you, put aside the info that doesn't.....
Otherwise, take the $ that is falling out of your pockets and go see every Dr you can find and go in a HUGE circle of confusion and frustration...... and you'll eventually end up right back here. Only with no money left. :o Well....in reality, you're gonna want to end up with SOMEbody with a medical degree at some point.....but there are ways to avoid wasting $ on those who don't have your best interests at heart.
I have faith you're gonna end up in good hands

AND
Absolutely! I'm SO glad you started your own thread. That was the smart thing to do! Your story has many facets to it and a lot of others will learn from your testimony.......so yes, my friend....I'm glad you didn't tag your first post on the end of some other thread......

So glad you've joined this 'club'.... :) as you put it ;)

Thanks, I have seen the "butter" / spread and the peanutbutter in stores around here, I will try them out. I also have a jar of fish oil caps, that I give to one of my dogs for his skin problems / allergies. I havent been taking it myself, but I will start. I also ordered some more online, as well as:


CAL-MAG CHELATED



VITAMIN D (D-3) 2000 IU



METHYLCOBALAMIN VITAMIN B-12 1000 mcg



CO Q-10 plus L-CARNITINE 50/100 mg


... hopefully that will give me a decent start on the supplements. I think I will try that along with trying to live without the ibuprofen, cutting back on the alcohol intake, investigating diet changes, asking my foot doc to have a go with the Neurontin (gabapentin), looking into the magnets and patches, trying to get a vitamin chart (or whatever the test is called), and take it from there .... maybe adding one piece at a time would be a good idea though, huh (so I can tell better what is working, or what isnt), or should I jsut shoot the moon and go for broke ? Thanks again for all the tips.

... what? No "5" ?


1) Cervical 2) Thoracic 3) Lumbar 4) Sacral 5) Ligeous


... sorry, couldn't HELP myself :winky:

This is a good start. The CoQ10 and carnitine may be too low a dose to see results. But none of your list is "harmful" in any way at this point. One thing about food is that certain additives like MSG can over excite nerves and give lots of problems. So with your dietary attention, avoid the MSG (monosodium glutamate) as much as possible. Also do not overdo on salt. When you start
Neurontin, there may be fluid retention, and eating salty foods (which are common in most restaurants) can make that more likely.

There is a guy who writes books, and publishes on Yahoo...
various lists of terrible restaurant food choices. Eat this and Not That is his moniker.

This is the website he is featured on:
eatthis.menshealth.com/
I cannot get this to load for me...I've had some computer DSL problems this weekend. But when that site is available check him out. He will explain why certain things are unhealthy, and then give you an example of what instead is similar and better.
Your library, may have his books too. And he has been a guest on Rachel Ray's show. I think he is very good for showing how you can eat tasty stuff and avoid the pitfalls of unhealthy food.
http://search.barnesandnoble.com/Eat.../9781594868542

So keep us up to date on your progress!

Here's a good web site for the second part of that concept!

And welcome, dogz! Glad that you've found us.

:yikes: I need some Maalox after viewing that list!

Do people actually EAT that stuff or was it for "fun"? I am one of those people who don't eat dessert typically... I think some ice cream in hot summer now and then is totally decadent!

Hahaha mrsD...I think it's for fun. It's not just dessets, and they update it almost daily. I can't help myself--I have to look.

My all-time favorite was the one in which someone built a Rubic's cube about 1 ft. x 1 ft. out of cubes of deli meats and cheeses. Oh, and "The Porkinator", which was a scultpture of a pig made out of various porcine products.

I don't mean to intimidate you? BUT....
 

HOw many of the 'stickies' have you read? Try this one on for size, then the next....
1 -http://www.aafp.org/afp/980215ap/poncelet.html
READ the whole thing.....
2 - http://www.neuroexam.com/content.php?p=2
Read the whole thing....
3- http://neuromuscular.wustl.edu/alfindex.htm
TRY and read the whole thing! Then sort out what your test results say to what you mite have? Or, even IF you've had enough tests to truly diagnose you?
Nothing is cheaper [tho time consuming?] than second opinions! I have had many for many different issues, and they HAVE SAVED MY LIFE! I've one of the less 'common' immune-related neuropathies, tho..it mite have been related to a cancer 'hatching' and diagnosed 18 months after I'd gotten diagnosed with the immune PN... Not one doc has connected the two? Because tests weren't done at a key time during the PN diagnosis. No matter. Treatment for me is still the same either way. But for you? I don't think you have been fully tested out yet! Even so? You still have to live with it all and the consequences! GO forth! Get tested, Be brave, Make the time for these appointments! Get to know WHAT you mite or mite not be dealing with! Go fight it all and face it all with a vengeance. You must do this now, when you can and while you can. I can't say this more emphatically.
I wasn't working [could not?] during my diagnosis, my exhaustion after each effort allowed me to 'pace' two doc appointments/tests a week. It'd take me three days to recover from one to get to the next. Soo, I'm essentially saying? Go and get revenge and prove to those docs YOU have a PROBLEM!
It IS exhausting, but worth it! :hug:'s and HOPE for sure! - j

Thank you so much for posting and being so open and inquisitive. :) I have been "lurking" here for a few weeks now and reading like a maniac trying to figure out how to "fix" my feet! I too have been a drinker since my college days and wonder if that is what has caused my severe PN...I have more than a sneaking suspicion that it IS. :( The symptoms started last year during my very long, drawn out and painful divorce from an abusive husband. My drinking did get out of hand. I was definitely self medicating and drinking very heavily. Now that I am out and on my own, my drinking has slowed down alot and I rarely drink during the week... only weekends. BUT, I just wonder if the damage is already done and I'm doomed to a life of chronic pain. :confused:
I know I'm rambling about things that most of you don't really want to hear about, but it sure feels good to vent! :p I just wanted to come out of hiding and say THANK YOU ALL for posting and sharing your stories, advice and options. For the first time in a long time I feel hope and that feels so refreshing. It's great not to feel so alone. :hug:

Of course we want to hear! Venting is sometimes a necessity, and it is so much better to vent with people who understand.

I'm glad you found NT, and would certainly like to hear more about your PN history. We are all here for each other. :grouphug:

Thank YOU, Mindy, for letting me know there are others out there in the same or similar situation ... and it means a lot to me for someone to say that they were somehow inspired or helped, by my posting my own "ramblings" here ,,, :)

... yep ... I know how you feel, and you know how I feel ... and there are lots and lots of others here,w ho know how we BOTH feel ... kinda comforting, huh?


You shouldnt feel alone, and you shouldnt worry about posting or "rambling" ... everybody here I'm sure, has been thru the same or is going thru the same or similar stuff ... including the doubts, confusion and anxiety that we are feeling now. I have had the thought before I knew this was "happening" to me, that people so often feel completely alone in whatever they are going thru, and we jsut cant realize how many other people are going thru the same things, and feeling the same way ... the abilty to connect and share those experiences, and talk instantly to other people almost anywhere in the world, really do make the internet a kind of miraculous thing. I'm glad you decided to talk about what you are going through, and the reactions Ive gotten here are proof I think, that people here are very compassionate, empathetic (for obvious resons), and want to help and support each other as much as they possibly can. We ARE members of the "club" now, so DONT FEEL ALONE! :hug:

For the sake of easing the 'guilt'.....
 

It's threads like these that are bringing more and more people 'out of the closet'........it's not a crime that we've done our share of 'partying' and other experimenting in our youth......
It's an individual choice of who wants to share how much.......

AND i'd bet my bottom dollar if we'd start a new thread entitled. "Who has NEVER done or tried anything constituting a 'bad' choice in life...".....
well, i bet that thread would be ...... blank. :o

A person could be a heavy drinker, with pre-disposed diabetic issues lurking in their genes, worked around toxic chemicals all their lives, and ate carbs like there were no tomorrow........ Where would the PN blame be ?
........ :confused: what is the point i'm trying to make...... ? I have no idea. :rolleyes: PN is PN period. Lifestyle changes are good for all of us, and pinning any ONE certain 'fault' is not what this is all about.
Sticking together as family and reaching out for the best medical/supplemental up-to-date aides there are IS what this is all about.
And supporting each other the entire journey.
Yep. That's the ticket.
:grouphug:

That's why this forum is so wonderful.
When it all boils down to the bottom of the pot, we're really all in the same......pot...... :grouphug:

Hugs to all
Rae

I don't like the "blame the patient" attitude that today's medicine has. Producing guilt, and shame, only isolates people from solutions, and increases STRESS and HELPLESSNESS and that feeds the inflammation causing some of the grief.

Doctors will blame patients for cancer, sometimes!

I really like forums like we have here that allow people to LEARN how to take control of their bodies, to improve their life and reduce pain and suffering. There is much we CAN do, and learning a new thing takes some getting used to and time. Patience also, and keeping an open mind are helpful. To make changes, in one's life is one step at a time, each day. Trying to do it all too fast may just be discouraging, since it took a while to get to the painful place you are at. It will take some time to LEAVE that place as well.

I dont really think ...
 

of it as a "moral" issue - I agree with Rae that it really doesnt matter what the cause is, I mean it may matter from a MEDICAL perspective, but not a moral one, in my opinion ... I will admit that I WAS, a little hesitant to talk about what seems to be the cause in my case, bcos of feeling like their will be more of a "stigma" about it, than somone who got it in other ways, but Im not hearing any of that here so far.

My alcohol use started as self-medication for emotional problems and traumas from my teenage years, and it continued as a combination of that and a just a "drink to unwind and have a good time" attitude ... I dont think there is anything "wrong" with drinking alcohol, from a moral perspective, it's jsut that many of us who do, dont have a good perspective on the physical dangers and harms of "too much of a good thing" ... we dont realize or beleive that it will eventually hurt us, and we jsut carry on ... didnt Abe Lincoln say somehting like "Show me a person with no vices, and I will show you someone who most likely has very few virtues"?

Anyway, I dont think anybody should feel in any way discouraged from telling their stories here, or from looking for answers for their symptoms, bcos of the cause of the condition ... so keep talking, Mindy, MizzMg, etc ... you can see that this is a very supportive community, regardless of what road brought each of us here.

Mindy ... my alcohol use hit its peak in my late teens and early twenties (I'm 45 now), and has slowly and gradualy declined since then ... I do not understand enough about the process, to really know why it has taken this long to kick in, so to speak, and why it "decided" to do so only recently, but Im guessing it was jsut a slow and gradual process of the alcohol toxicity building up over time, combined with poor nutrition ... as someone pointed out right here on thsi thread (Glenntaj, I think), it does not seem to be established for sure weather the PN is caused by alcohol poisoning directly atacking and damaging the nerves, or from the fact that "heavy" drinkers tend to have poor nutrition to start with, and the alcohol tends to leech away what nutrients we do get in us, over a long period of time ... then you combine that with possible genetic predispositions, environmental (external) factors, and so on ... so the cause or causes can be much more complicated, Im sure, as Ive seen discussed here already, in the relatively small amount Ive read ... anyway, dont feel alone,and dont give up ... :)

Take Mrs D's advice? And ....
 

Deal with what IS not what it mite be! Go from there and forwards.
Take a look at some very early posts by Nide 44? His docs at first said drinking? You are at fault...or the like. Mine did as well, as if a glass of wine or beer now and then made you an akly? Some docs think like that. I don't know where they live or what planet they are from. All that is needed is an clear understanding of the chemical changes that can hurt nerves or decrease nerve regeneration. That's striclty chemistry.... Alkymyst? Where are you now? To help us all? It's complicated stuffs, but once explained, IF spririts are the culprit? It can be tested for and told. However? Damages to your system[s] can be more complex and thus harder to diagnose.
Any doc who says: THIS IS IT! YOU ARE OUT! Go get a second opinon ASAP! And then a third fourth whatever necessary! In my case, Yes I'd had a glass of wine now and then? BUT, it was the 10-12 week bout of pneumonia that had got me worn down! To an immune PN! This 'happens'! Don't want it to? But, it does happen. As Nide44 suggested? YOU have now the charge of being in CHARGE of diagnosing yourself?
Please, read the stickies, learn, and then ask questions? INFORMED questions, please. I know and understand the panic one gets when coming down with PN crud? It is NOT FUN? At ALL! IF you keep on and learn on and ask key questions? YOU mite find some answers.... Getting this is terrifying, finding solutions requires resolution AND perseverance... Plus using your brain full time during the whole process... I truly do not know HOW or what Docs thinkl about us? I'd love to know tho..... If I were to choose a word? It'd be WILEY. No more no less, we've been running on instinct! No? :hug:'s - j