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Idiopathic Peripheral Neuropathy

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Old 04-13-2009, 03:58 PM #41
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Originally Posted by numbfoot View Post
Just reviving this thread.
I'm still alive & kicking
Since November my Neuropathy is slowly progressing to upper thighs, lower back & palms of hands. My right foot is still the worst area. I have no pain, although occationally right foot can get cramp like pain, usually in bed at night.
I am still taking the B12 but have cut down to 1MG per day, having got my level above 500.
I am worried about loosing strength in the right ancle & so are keeping up with the cycling as often as possible. Like everything that you have to do, it is becoming a chore & I find myself having to force myself to do it. I tell myself that I am still so much better off than others who can't get around at all.
I know you are not going to like this comment, but I have to say it.

Can you find another form of exercise besides the bike?
I ask because the recumbent bike at the gym I go to was awful on my feet and left ankle!

I think LP refers to lumbar puncture. (this can reveal MS or autoimmune factors, and sometimes they test for B12 in too)
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Old 04-13-2009, 04:14 PM #42
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I would love to dump the bike, but for me it seems to be the best choice.
I am open to other sugestions though.
My Lumber Puncture didn't show anything helpful.
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Old 04-13-2009, 04:41 PM #43
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Many people have been on this board and its predecessor who have used water therapy, swimming and water aerobics
successfully.

And one of them was a DOCTOR (a midnight ER physician who also was a bicyclist). He claimed it was a "cure" for him!
That was about 5 yrs ago. But some here do use swimming
to help.
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Old 04-13-2009, 07:42 PM #44
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Yes I have allways loved swimming & will get back into it when it gets to cold to cycle. But I don't find it works my legs & ankles as hard as the cycling.
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Old 04-13-2009, 07:55 PM #45
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If you have a professional bike fitting service, get it done again if you have not had it done already. I have bad neuropathy. I used to do sprint tri's. My autonomic nervous system was affected and now I can not run at all due to the hypotension. I was completely unable to bike last year, but this year, maybe with the IVIG treatment, I perhaps can get some exercise.

Anyway, your proprioception could be off, and you should have your pedal stroke looked at. Keep in mind you won't feel your feet getting sore or things rubbing holes in your skin....and your hands likewise.

Wishing you tailwinds.

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Old 04-13-2009, 09:16 PM #46
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Thank you cyclelops.
I have a farely new good quality bike with full suspension.
It is set up for my build & no-one else uses it.
I usually do about 12 killometers on a run, mostly off road, so the body gets a fare veriety of movement.
My PN is not severe enough to prevent me from doing everyday things.
Just makes them feel a bit awkward.
If people ask me how it feels, I can't really explain it.
A classic example is doing up the buttons on my shirt cuffs.
Instead of doing it by feel I now have to have to put my glasses on to see what my fingers are doing.
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Old 04-14-2009, 07:42 AM #47
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I agree about pool walking or can you even just walk outside or in a mall? I know for me they told me though I have PN and RSD so am a little different how key range of motion is and strength training so I am wondering if you would benefit too from something like that. In addition hand excersises. Have you ever worked with a PT person?
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Old 04-14-2009, 12:02 PM #48
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Just a note: denture cream use has been linked to neuropathy. Long-term use of denture cream results in exposure to large amounts of zinc, which can cause neuropathy. Exactly what "long-term" use amounts to is an open question at this point.

I have created 2 other threads on this subject, you can do a search for them if interested, or PM me.
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Old 04-14-2009, 02:01 PM #49
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MrsD, since my B12 was last tested at 690, would I still benefit from a supplement?

How I wish I had access to a pool. I have read not only on this site, but from other people, just how much swimming has improved their condition.
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Old 04-15-2009, 08:35 AM #50
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I think that 690 is suspect, altho it does fall in the low-normal range.
B12 supplement wouldn't hurt, and you might benefit from it.
You cannot overdose on B12- excess is excreted, just like vit C.
In the Methyl form (methylcobalamin) as opposed to cyanocobalamin,
it is more readily absorbed by the body.
I take 1000-2000 mcg (1-2 mg)of methylcobalamin per day, sublingual.
It has brought me up to 1100-1200 when last tested.
I've been taking it daily for over 7 years.
I get Jarrow brand form iherb- it is fairly inexpensive, if you get a 3 or 4 mo supply.
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