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Old 11-18-2007, 09:01 AM   #1
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Question New to board. Diagnosed peripheral neoropathy. Any advice for treatment?

I am new to these boards.

I was diagnosed with peripheral neuropathy about a year ago, following a slow onset of symptoms. The Dr. ordered an electromyography which confirmed his findings.

Let me mention - I am not diabetic, alcoholic, leprotic, nor do I have vitamin deficiencies. I was tested for every known form of poisoning, heavy metals, etc. They have not been able to establish the underlying cause.

My symptoms are pretty straightforward. Some numbness in feet and occasional tingling in hands. Occasional pain. Coldness in feet and hands. (and the diagnoses was clouded by the fact that apparently I have developed some degree of Raynaud's Syndrome which manifests in the cold).

The problem is this - - the condition is progressing. The only form of "treatment" the Dr. has been able to offer is pain medication. But my problem isn't pain, it's the worry about the advance of the condition.

So I'm not seeking advice on pain management, I'm seeking some input on halting the progression (or, and of course I don't expect this, reversing the damage). Any thoughts or suggestions would be appreciated.

. . . Stu

Last edited by StuSegal; 11-18-2007 at 11:25 AM.

 
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Old 11-22-2007, 02:55 AM   #2
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Re: New to board. Diagnosed peripheral neoropathy. Any advice for treatment?

hI.....mY ADVICE: exercise, exercise and some more exercise. Start on the treadmill
If you can't do it, try pedaling but, although my doctor does not agree with me
re: weight-bearing exercise the best for pn, I would advocate it for you. After years
of suffering, I now am 90% pain free from exercise, diet, and medicines. I take
hydromorphone and nortryptilene. Dont suffer years of pain because medicine has
a bad rap. the woondog

 
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Old 11-22-2007, 06:55 AM   #3
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Re: New to board. Diagnosed peripheral neoropathy. Any advice for treatment?

Woondog - thanks for the reply.

Your advice is most interesting and welcome. I can exercise and do walk and, believe it or not, love to juggle. Yes I juggle balls, circus pins, etc.

The thing is, I have read in certain places, that there's a thought that repetitive motions may affect the nerves and cause or magnify pn. So now every time I juggle I have this nagging thought that I may be causing more damage, instead of improving my health (which it certainly feels like when juggling). Hey, it's aerobic, it gets your whole body moving, it's great for hand/eye coordination, and for flexing the spine.

Do you have any thoughts on this?

(BTW, when I read that "repetitive movements" may increase pn, I really wondered about walking - it's an awful lot of repetitive movements - and I certainly can't give up walking.

 
Old 11-23-2007, 01:03 AM   #4
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Re: New to board. Diagnosed peripheral neoropathy. Any advice for treatment?

Quote:
Originally Posted by StuSegal View Post
I am new to these boards.

I was diagnosed with peripheral neuropathy about a year ago, following a slow onset of symptoms. The Dr. ordered an electromyography which confirmed his findings.

Let me mention - I am not diabetic, alcoholic, leprotic, nor do I have vitamin deficiencies. I was tested for every known form of poisoning, heavy metals, etc. They have not been able to establish the underlying cause.

My symptoms are pretty straightforward. Some numbness in feet and occasional tingling in hands. Occasional pain. Coldness in feet and hands. (and the diagnoses was clouded by the fact that apparently I have developed some degree of Raynaud's Syndrome which manifests in the cold).

The problem is this - - the condition is progressing. The only form of "treatment" the Dr. has been able to offer is pain medication. But my problem isn't pain, it's the worry about the advance of the condition.

So I'm not seeking advice on pain management, I'm seeking some input on halting the progression (or, and of course I don't expect this, reversing the damage). Any thoughts or suggestions would be appreciated.

. . . Stu

 
Old 11-23-2007, 01:20 AM   #5
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Smile Re: New to board. Diagnosed peripheral neoropathy. Any advice for treatment?

Hi. I have suffered with this condition for 6 yrs. Take Lyrica every four hours religiously and it seems to keep things in hand. I don't think that the doctors know any more than we do. Just keep doing your own research and pray that they come up with something that will finally answer some of our questions. Just listen to your own instincts regarding exercise. I lift weights and walk. It does tire a person out, I think, just being under stress all day dealing with the pain and all. Good luck and stay in touch with this site: it has helped me. Take care and keep up the good fight. Joyce

 
Old 11-24-2007, 12:18 AM   #6
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woondog HB User
Re: New to board. Diagnosed peripheral neoropathy. Any advice for treatment?

After 25 years with pn, and a member of various pn clubs during that time, I have
never heard that repetitive motions might cause pn. On the face of it, that notion
appears to be outragious but one never knows.....Vitamin b6 or 12, I forgot which,
is recommended for people with pn but if one takes too many doses, it causes pn.

whatever.....we have all heard outragious things....just a few days ago, a doctor
from London published a report which stated binge drinking is ok for pregnant women..
also sounds crazy.

If you are very concerned about repetitive excercise, you get aerobic in the weight
room by working intensely at one machine, then running to another machine
without taking a break. Do that for an hour and you will be ahead of yourself.
the woondog!

Last edited by woondog; 11-24-2007 at 12:19 AM.

 
Old 11-28-2007, 03:35 PM   #7
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Re: New to board. Diagnosed peripheral neoropathy. Any advice for treatment?

Woondog -

Yes, repetitive motions. I read this on the Mayo Clinic's site, in their causes of PN page, located here [url]http://www.mayoclinic.com/health/peripheral-neuropathy/DS00131/DSECTION=3[/url]

Not only does it seem strange, it certainly isn't supported by your own experience which suggests that certain repetitive movements may actually help.

 
Old 11-28-2007, 03:53 PM   #8
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paulo60 HB Userpaulo60 HB User
Re: New to board. Diagnosed peripheral neoropathy. Any advice for treatment?

I also have PN, first diagnosed via EMG 20 years ago. Have had every conceivable test except biopsy; currently waiting for results of new testing. I am also neither diabetic, leprotic or alcoholic. Mine moved to the pain stage about 9 years ago, and about all I can offer is keep your hopes up that at some point an aggressive neurologist might find the latest test and reveal the cause, for you and all the rest of us with idiopathic PN. Oh yes, exercise and not smoking are probably the best bet on quality of life. Paulo

 
Old 11-28-2007, 09:11 PM   #9
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Re: New to board. Diagnosed peripheral neoropathy. Any advice for treatment?

hey there, i don't have Pn but i do have progressive raynaud's disease ( i understand that you have the syndrom form due to your pn) i'm only 20 and i already can't hold a cold soda can with out it being covered up or else i go numb. The best advice i can give you is not only to run and keep active, but get your self a good pair of gloves, wooly socks and ear muffs. if you have to go out into the cold, try placing them in the microwave for 5 to 10 seconds this will give them a nice jolt of warm before going out and keep you warmer longer. as far as progression just try and keep up with it, don't let your self be numb for too long, the longer you wait the more likely your vessels are to close up quicker the next time (if you do indeed have a progressive form, which unfortuntaly, you said you do). I keep a pair of gloves next to my fridge and freezer to use in each place and wear heavy socks to bed. one basic rule i've learned: if it's under 50 degrees cover up. well i hope i could be of some help. take care and the best of luck,
dani-beth

Last edited by danibeth_2000; 11-28-2007 at 09:12 PM.

 
Old 11-28-2007, 09:19 PM   #10
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Re: New to board. Diagnosed peripheral neoropathy. Any advice for treatment?

Hi Stu, B6 is the one you must be carefull with, to much can cause nerve problems, it's best to just take a good quality B complex every day, say in the morning and on a empty stomach & take at least 1mg of B12 [methylcoblamin] it's the best form as its already in active form, b12 needs the other B's to work better, but not taken at the same time.
Just curious of what your b12 levels were when tested, i believe anything under 500 these days is a bit sus, also did you have a 3 -5 hour glucose tolerance test, as even prediabete's can cause the exact same problems as full blown diabetes.
The numbness, coldness are the small nerves carrying on, no emg or ncv will be able to pick that up as they only test for the larger nerves, usually Quanitive sensory velocities is normal procedure when diagnosing PN, it should be able to see how much damage there is to your small nerves or a skin punch biopsy will do the same, but QSV is normally the first step.
I suggest that you see a neuro that is a PN expert, a normal neuro who isn't well informed about PN will only give the basic tests.

 
Old 11-28-2007, 09:52 PM   #11
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Re: New to board. Diagnosed peripheral neoropathy. Any advice for treatment?

Quote:
Originally Posted by danibeth_2000 View Post
hey there, i don't have Pn but i do have progressive raynaud's disease ( i understand that you have the syndrom form due to your pn) i'm only 20 and i already can't hold a cold soda can with out it being covered up or else i go numb. The best advice i can give you is not only to run and keep active, but get your self a good pair of gloves, wooly socks and ear muffs. if you have to go out into the cold, try placing them in the microwave for 5 to 10 seconds this will give them a nice jolt of warm before going out and keep you warmer longer. as far as progression just try and keep up with it, don't let your self be numb for too long, the longer you wait the more likely your vessels are to close up quicker the next time (if you do indeed have a progressive form, which unfortuntaly, you said you do). I keep a pair of gloves next to my fridge and freezer to use in each place and wear heavy socks to bed. one basic rule i've learned: if it's under 50 degrees cover up. well i hope i could be of some help. take care and the best of luck,
dani-beth
Good advice in general, but I don't have those symptoms you refer to. I have the more classic PN in lower extremities, unrelated to Rayauds syndrome; numb feet and alot of nerve pain. Plus, I can't run as I have prosthetic knees, but I do exercise. Appreciate the response, and sorry to hear of your problems so young. Haven't researched your illness, but I pray that if not curable now it will be soon. Paulo

 
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