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 ...