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Old 08-28-2012, 03:31 PM #1
linter linter is offline
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Default What could cause partial reverse of footdrop w PN?

hi, all: i have been diagnosed with idiopathic PN or CIDP -- the doctors can't tell me which it is, for sure -- and, among other symptoms, have experienced major footdrop in both feet, with the right foot being the most involved. Until a week ago, I could not tap my right foot, nor move its toes. everything was deadsville. But then a friend was over at the house and, out of the blue, said, 'dude, your toes are moving!' and, by golly, they were. All of a sudden, I could lift my right toes, clench my right toes a little, and tap my right foot, almost like old times. I have no explanation for this. I ended a 10-session IVIG treatment almost a year ago, with the doctor telling me it'd done no good, and that there was no reason to continue.

In the past month or two, the only things I've done differently are:

1/ had a spinal tap to see if it says anything about NP vs CIDP
2/ starting making breakfast shakes with a good bit of cayenne pepper
3/ started taking a small amount of adderall daily (dr prescribed to help kick start my anti-depression meds).
4/ cut back on drinking, from 3 - 4 glasses a day, to 2 - 3 glasses two or three times a week, if that.

so ... do you think any of the above, alone or in combination, could be the reason for this spontaneous reversal?

one final thing: i am a surfer and the reversal has had a major impact on my surfing, for the better. that's where I really notice what's happened.

would ask my doc about all this but i don't see him again until the end of sept.

thanks for any thoughts you might have!
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Old 08-29-2012, 06:06 AM #2
glenntaj glenntaj is offline
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Default Well--

--CIDP, and some other neuropathies that are autoimmune in nature, can have a relapsing/remitting pattern, in which there are exacerbations but then some slow healing and regain of function (until the next exacerbation).

The trick is to find a way to maintain the function regaining and avoid exacerbations. That is what IVIG presumably does in those it works for--it cleans out enough of the offending autoantibodies to allow for some healing.

The progress of neuropathy is very individual in any case.

What kind of work-up have you had, and what kind of testing?
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mrsD (08-29-2012)
Old 08-29-2012, 06:24 AM #3
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Stopping drinking may be something for you to think about.

Having bilateral foot drop, suggests a spinal problem or
a compression of the peroneal nerve from behind the knees.

Surfing involves injuries at times and you may have hit the backs of your legs and compressed that nerve, which runs behind the knee.

Other injuries also can do this. People who skydive can compress this nerve when landing and injure it. Also sitting crosslegged for long periods, or kneeling etc.
This diagram shows the back of the leg where the peroneal nerve is located (yellow). It is quite vulnerable there and some lifestyles or sports can injure it.
http://www.google.com/imgres?imgurl=...QEwBw&dur=4862

So it is difficult to say what your problem is. But if I were you I'd stop drinking entirely and see if you improve and stay at a better functioning level. That would be your answer I think.

More on peroneal nerve problems:
http://www.nlm.nih.gov/medlineplus/e...cle/000791.htm
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Old 08-29-2012, 08:14 AM #4
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glenn: thanks for your response. as to work-ups, i've had every pn/cidp work-up known to mankind, i think, and nothing has given the MDs any clues as to the cause or to even an absolute diagnosis. suffice it to say, i was very disappointed when the ivig round produced no results (unless, of course, the present regaining is a delayed ivig reaction ....). got the spinal tap two weeks ago but won't get results until end of next month. if it shows indications of cidp, the doc may try steroids on me.

mrsD: well, my footdrop isn't exactly bilateral, it's just worse on the right side. plus, i'm pretty sure i've never suffered an injury such as you describe. i'm kind of inclined to think maybe the drinking is, if not the cause of the problem, than at least a big contributing factor. At the time I felt the numbness coming on, I was not drinking and had not been drinking for 19 years. Six years ago, I started up with a bit of wine and then increased that bit of wine to about 1/3 - 1/2 bottle a day and, during that period, the PN took off like a rocket. coincidence or causation, i don't know, of course, but it sure couldn't hurt to lay off the booze for a year or two and see what happens.

thanks again for speaking up!
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Old 08-29-2012, 09:36 AM #5
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Of all the alcohol types, I think wine is the biggest trigger, followed by beer. There are congeners in wine:
http://en.wikipedia.org/wiki/Congener

I can't tolerate wine at all. Flares my PN like crazy. But I can use a "clean" vodka... Some vodkas are filtered to remove congeners, like Skyy, and Smirnoff.
You could test this yourself, and if a "clean" vodka still flares you then it is the alcohol. If not, then it may be the congeners in the wine. Wine also has sulfites in it and some people react to that with an allergic histamine type response. So that is another reason to avoid wine if you have PN.

There is a fat pad behind the knee to protect the peroneal nerve. Some people who are very thin do not have this fat pad and are therefore more vulnerable to compression there.

If your foot drop was from something in your environment which you either consumed or initiated with some sort of activity or accident and that has changed, then you may see improvements like your describe.

With time if your foot drop returns, then further testing to see what may be happening to you as far as autoimmune triggers would have to be done I would think.

And stopping the drinking entirely may also demonstrate the alcohol involvement.

Quote:
Originally Posted by linter View Post
glenn: thanks for your response. as to work-ups, i've had every pn/cidp work-up known to mankind, i think, and nothing has given the MDs any clues as to the cause or to even an absolute diagnosis. suffice it to say, i was very disappointed when the ivig round produced no results (unless, of course, the present regaining is a delayed ivig reaction ....). got the spinal tap two weeks ago but won't get results until end of next month. if it shows indications of cidp, the doc may try steroids on me.

mrsD: well, my footdrop isn't exactly bilateral, it's just worse on the right side. plus, i'm pretty sure i've never suffered an injury such as you describe. i'm kind of inclined to think maybe the drinking is, if not the cause of the problem, than at least a big contributing factor. At the time I felt the numbness coming on, I was not drinking and had not been drinking for 19 years. Six years ago, I started up with a bit of wine and then increased that bit of wine to about 1/3 - 1/2 bottle a day and, during that period, the PN took off like a rocket. coincidence or causation, i don't know, of course, but it sure couldn't hurt to lay off the booze for a year or two and see what happens.

thanks again for speaking up!
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