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Old 01-04-2012, 11:24 AM #1
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Originally Posted by Aussie99 View Post
My Gp believes that antiinflammatories help numbness.
I don't know either way. What I have noticed is that inflammation aggravates/exacerbates my numbness/symptoms, so reducing inflammation reduces the additional numbness.

Doc
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Old 01-07-2012, 01:28 AM #2
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I don't know either way. What I have noticed is that inflammation aggravates/exacerbates my numbness/symptoms, so reducing inflammation reduces the additional numbness.

Doc
Hi Dr.Smith.
Thank you for your reply. I guess my concern is that I have been prescribed the paracetamol to stop the numbness. I am not taking it. I take 1-2 advils a day instead. That's about 400 mg of advil a day instead of 4 grams s of panadol a day. Since the advil is really an anti-inflammatory (panadol is not) I thought that if I really have inflamed nerves and this is the reason for the numbness... I have a better chance with the advil. It has gotten about 15- 20% better since it's onset. That's not very much but at least it's something. I have my doubts though that anything can really stop numbness. Numbness is not pain.
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Old 01-07-2012, 09:57 AM #3
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I have my doubts though that anything can really stop numbness.
Numbness is ostensibly caused by damage to the nerves; they're not signalling anything (whereas pain is a signal sent by healthy nerves). Rather than stopping numbness, I think what needs to be done is stop whatever is damaging the nerves, and allow them to heal (if possible) or regrow.

I take a prescription anti-inflammatory, and I can't say that it helps my numbness one iota, though it does help the pain from inflammation. What I have noticed is that there are some things that aggravate/worsen the numbness, and that by doing the opposite of those things, the numbness lessens (and perhaps the nerves begin to heal/regrow). This takes a long time. I'm getting some results from the supplements I take (RLA, ALC, B5); they're not only controlling the pain (burning, stabbing, electric shocks), they also seem, over the long term, to be helping the numbness.

I can't say this will work for everyone (it depends on the cause of the PN, and I don't even know my cause yet!) but if we can figure out what's making us worse and halt/stop the progression, we can find ways to regenerate those nerves to some extent. I don't expect to ever be the way I was, but I'm old enough to compromise; there are a lot of things I'm learning to have to live with (though I don't do it quietly ).

I learned some things that help by googling/reading all kinds of things related to neurogenesis. We must use common sense and caution because there's so much snake oil and hooey floating around out there, and no end to the charlatans eager to take our money.

Doc
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Old 01-08-2012, 06:36 PM #4
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Dr. Smith:
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We must use common sense and caution because there's so much snake oil and hooey floating around out there, and no end to the charlatans eager to take our money.
Yep! I agree. And as you also mentioned, what works for one person's PN may make another person's worse. So even personal advice from sensible, experienced people should be checked against one's own symptoms and experience.

For example, Zorrro13 wrote:
Quote:
I went to a few party's and participated in the holiday festivities including alcohol which for me is big irritant and lights up my PN like a xmas tree right from the very first sip.
I usually have a couple of glasses of wine in the evening, and it seems not to affect my symptoms. When I stop for a couple of weeks the numbness stays the same -- no decrease. Different response.

And Echos Long Ago wrote:
Quote:
my legs feel more numb higher up when i walk or do exercize.
Again, that's opposite from what I experience.

What appears to be the worst for me is sitting for long periods. Even then -- like on a recent flight from Charlotte to San Francisco -- if I take care to be active before and after sitting I can keep the numbness at "normal" levels.

(I'm the nut in the airport doing toe raises while waiting for my flight... )

It seems like PN is like a set of somewhat related illnesses. It can be so different for different people.
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Old 01-08-2012, 07:47 PM #5
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It seems like PN is like a set of somewhat related illnesses. It can be so different for different people.
It's... a lot of things; a symptom, a condition, a disease... (as many other things are).

Above all, it's a pain in the patoot and a cussed nuisance.

Doc
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Old 01-09-2012, 11:14 PM #6
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Quote:
Originally Posted by Dr. Smith View Post
Numbness is ostensibly caused by damage to the nerves; they're not signalling anything (whereas pain is a signal sent by healthy nerves). Rather than stopping numbness, I think what needs to be done is stop whatever is damaging the nerves, and allow them to heal (if possible) or regrow.

I take a prescription anti-inflammatory, and I can't say that it helps my numbness one iota, though it does help the pain from inflammation. What I have noticed is that there are some things that aggravate/worsen the numbness, and that by doing the opposite of those things, the numbness lessens (and perhaps the nerves begin to heal/regrow). This takes a long time. I'm getting some results from the supplements I take (RLA, ALC, B5); they're not only controlling the pain (burning, stabbing, electric shocks), they also seem, over the long term, to be helping the numbness.

I can't say this will work for everyone (it depends on the cause of the PN, and I don't even know my cause yet!) but if we can figure out what's making us worse and halt/stop the progression, we can find ways to regenerate those nerves to some extent. I don't expect to ever be the way I was, but I'm old enough to compromise; there are a lot of things I'm learning to have to live with (though I don't do it quietly ).

I learned some things that help by googling/reading all kinds of things related to neurogenesis. We must use common sense and caution because there's so much snake oil and hooey floating around out there, and no end to the charlatans eager to take our money.

Doc
Dr. Smith,

I have tried to reply twice over the weekend from my ipad. It just wasn't working. Thank you for your reply to me. I agrre one can't stop the numbness only try to stop the damage assuming we know what is causing it. That is why I didnt want to take all that Panadol. I did take a single dose Diflucan for a yeast infection one week before this sensory PN came on and I am wondering if Diflucan causes PN. In saying that last March I was involved in a car accident which gave me whiplash and caused a massive flare of PN all over my back, head,arms. This might also be from that. I give up. Just glad I am ok most days. Thanks once again.
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Old 01-10-2012, 12:19 AM #7
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I did take a single dose Diflucan for a yeast infection one week before this sensory PN came on and I am wondering if Diflucan causes PN.
A known, rare (less than 1/10th of 1%) adverse/side effect is paresthesia, so I spoze it's possible, but permanent PN from a single dose seems unlikely, unless it was a trigger (catalyst) for some underlying situation.

Have you tried all the "MrsD-recommended" supplements?

Doc
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Old 01-10-2012, 11:03 AM #8
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Hi Dr. Smith, In regards to the supplements I am so unsure what to do. I am ordering the R-Lipoic acid today but it seems everytime I go to take something either my neuro or rheumo tell me not to murky the waters. I come here and read what seems to be good results with supplements etc. I have so many supplements in my closet at home. I had a doctor at the Sjogrens clinic at Hopkins tell me to throw them all in the trash, don't even take a daily vitamin. How do all of you handle it if your docs tell you not to take supplememts you think may provide some relief? I have a medical background but yet I am so confused with all of this. Good nurse bad patient!
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Old 01-10-2012, 11:16 AM #9
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Lightbulb

The doctors who tell you to throw them out.... don't even understand them or study them or read the newest papers.

There is a decade of information about PN for acetyl carnitine, lipoic acid, and benfotiamine now. CoQ-10 for statin damage. Some is from Europe and other countries, where people are more open minded.

If you have kidney damage, supplements must be carefully used.

But if you have nerve damage, there are some supplements that help repair that. It has been shown in biochemical papers! Remyelination does happen, and now some in the MS community actively pursue this path.
example:
http://www.msrc.co.uk/index.cfm/fuse...how/pageid/772
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Old 01-10-2012, 01:47 PM #10
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How do all of you handle it if your docs tell you not to take supplements you think may provide some relief?
That's a tough one... but a really good one!

A long time ago in a galaxy far, far away.... I was sitting in a (former) doctor's office asking about something I wanted to pursue. I can't remember exactly what it was (It wasn't something out there on the fringe; I'm generally pretty conservative, and was even moreso back then) but I'll never forget his response, cuz it burned into my brain (as well as burning my posterior... )

He said, "That's not in my belief system."

WHAAAAAA? His "belief system"

That was my first introduction to that phrase. Until then, I had always thought that medicine was medicine, and while doctors may hold different opinions on subjective matters, they were pretty much on the same page as far as objective science went.
(I'll wait for mrsD et al to pick themselves up off the floor.... )

The moral is, these guys/gals (doctors) can be just as opinionated, despite scientific evidence, as any of us.

I referred to the doctor above as my former doctor - not just because of the above incident, but for a lot of reasons; he just wasn't a good fit for me, so I, in effect, fired him.

The moral is, doctors work for us - not the other way around (though many of them see it that way). WE have the final say in any decisions regarding our medical care - not them.

Now, in fairness, from their perspective, half of the patients they see are below average (think about it), and they usually see/interact with most patients for only a few minutes a YEAR, so it's not all that surprising that they become jaded about certain things they see a lot of, and something they see a lot of is patients coming in with some article/ad about some vitamin, supplement, or new prescription drug* that will cure patients of just about anything, including "in-laws". There are some people (and I'm not talking about anyone here), who do take all kinds of supplements they don't need and could probably do without - some, even hypochondrial.

* Ask YOUR doctor if Progenitorivox is right for YOU!

Most doctors I know have no problem with things like daily vitamins (even if they don't believe they're doing us any good, they're not harming us) and there are many (like calcium for women) that are just plain a good idea, especially since the Industrial Revolution, which changed a LOT about what nutrients we get and how (but that's a whole 'nother ball-o-worms in itself).

So, while I can understand where your doctors are coming from, I don't agree with them.... entirely (but I'm just "some guy on the internet" - seriously!) My feeling is, if there's a good reason to be taking a supplement (and that's the tricky part), then there's a good reason to be taking it, along with, if it can't hurt to try it, then it can't hurt to try it (redundancies intentional). I do agree that supplements can sometimes muddy the waters (if taken willy-nilly), so we should be careful to document what we're taking, why, and provide the doctors with lists (all my doctors ask for such lists anyway - I keep an Excel Sheet that I can update/print off each time I go to a doctor).

How we add/discontinue supplements is important. It should be done one-at-a-time (with a few exceptions), and not too close together, so we can determine what, if any, effect they are having. It's probably also a good idea, if practical, to be tested before starting something, and again periodically, to determine if there is in fact a need to be taking/continuing it, and if there isn't, or there isn't any positive result/benefit from taking it, we should probably discontinue it so that it doesn't muddy the waters.

Bottom line - it's your body - your health - your life - your decision. How do you handle it? "Doctor, I respect your opinions, but I have researched this carefully, and I believe this is worth trying, and the potential benefits outweigh the risks." or words to effect. That's how I'd handle it, and have handled it.

Best Wishes & Good Luck,

Doc
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