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Old 02-12-2012, 05:05 PM #21
Susanne C. Susanne C. is offline
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I hesitated about posting this, because it isn't really positive, but my son, who has inherited neuropathy, does drink to excess at times. He is not in pain (yet) suffers more from extremely weak ankles, walks on the sides of his feet, and is beginning to have trouble with weak calf muscles, walking up stairs, etc. he is 27, so is experiencing some symptoms earlier than I did. He is 6'4", thin, asthmatic, but otherwise in good physical condition.
I do think that his drinking is a form of self medication, but in his case for Asperger's syndrome rather than PN, since he isn't in pain. It seems to help his social anxieties, but he sometimes has trouble knowing when to quit. He is not on any medication, so that is not a worry. I have heard that drinking with inherited neuropathies is not quite the danger that it is with other types, but I am not certain if this is true. He does fall a lot and has had several severe concussions, so I don't think it is a good idea, even without the meds.
He lives and works in China, where heavy drinking is a more generally accepted part of the culture.
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Old 02-12-2012, 05:21 PM #22
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It used to be thought that drinking damages nerves because the calories consumed replace nutritious food.

Now there are some studies coming out that there can be a direct toxic effect on nerves.

I think this depends on the person. Some people have errors genetically in the metabolism of alcohols and aldehydes. These people may be more affected earlier than others, as the toxins build up when alcohol is metabolized.

Walking on the inner ankles...is called pronation. And this can be fixed with orthotics in the shoes. My son pronates only on his right ankle, and could never find the right shoe. After we had him fitted for the orthotics, he is totally a new man!
Some ankle issues are structural, and not just nerves.

For what it is worth, my husband had a terrible alcohol issue...never a DUI or in public, but enough to make him sick!
He never had any nerve issues at all! He has been sober now over 9yrs, and doesn't drink a drop. Still no nerve issues.
So it really depends on the person, the genetics, and the diet.
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Old 02-12-2012, 05:34 PM #23
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Quote:
Originally Posted by Susanne C. View Post
I hesitated about posting this, because it isn't really positive, but my son, who has inherited neuropathy, does drink to excess at times. He is not in pain (yet) suffers more from extremely weak ankles, walks on the sides of his feet, and is beginning to have trouble with weak calf muscles, walking up stairs, etc. he is 27, so is experiencing some symptoms earlier than I did. He is 6'4", thin, asthmatic, but otherwise in good physical condition.
I do think that his drinking is a form of self medication, but in his case for Asperger's syndrome rather than PN, since he isn't in pain. It seems to help his social anxieties, but he sometimes has trouble knowing when to quit. He is not on any medication, so that is not a worry. I have heard that drinking with inherited neuropathies is not quite the danger that it is with other types, but I am not certain if this is true. He does fall a lot and has had several severe concussions, so I don't think it is a good idea, even without the meds.
He lives and works in China, where heavy drinking is a more generally accepted part of the culture.
Having a few drinks with an inherited neuropathy is not bad. But overdoing it is not good as a person usually has trouble walking (balance problems) anyway and getting tipsy makes it worse of course. So a little is fine but a lot not so good.
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Old 02-12-2012, 06:05 PM #24
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Quote:
Originally Posted by mrsD View Post

Walking on the inner ankles...is called pronation. And this can be fixed with orthotics in the shoes. My son pronates only on his right ankle, and could never find the right shoe. After we had him fitted for the orthotics, he is totally a new man!
Some ankle issues are structural, and not just nerves.


So it really depends on the person, the genetics, and the diet.
Thank you for this. Actually he walks on the outside of his feet, to the extent that he is forming callouses. Back when i was a girl and shoes had rubber soles and heels mine were always worn down on the outside edges too. Newer sole materials don't show the wear the same way.
He isn't on our insurance anymore so on this recent visit home we just bought OTC ankle braces, which he loved as he had borrowed his basketball player brother's braces for a while. I did suggest he look up an orthotist back in China. Medical care is very affordable there, but also very uneven.
He doesn't drive, never liked it, so no worries there! But they have said if he hits his head again he is in danger of severe brain damage. I would go crazy if I thought about it too much, but we never know when we are going to get one of those calls or letters.
Thank you both.
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Old 02-12-2012, 07:49 PM #25
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I have an occasional wine cooler or glass of wine during the summer. It did seem to help PN pain a little sometimes but doesn't agree with my blood pressure med and is not worth it for me. I think there could be a real potential for abuse and related problems in self medicating that way...you might trade one set of problems for another.

I don't know how old you are Jiggered. An alcoholic death is not dignified. I live in a senior apartment complex and we have a broad spectrum of tenants. One of my neighbors died a few weeks ago of alcohol related liver failure. She spent the last 2-3 years of her life wearing diapers and occasionally 'escaping' when her husband left her alone. She then either fell down in the street trying to walk to the bar or stood on the corner attempting to flag down a car to drive her. She had been a paralegal.

I hope you find a comfortable solution.
Judi

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Old 02-14-2012, 01:27 AM #26
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Quote:
Originally Posted by zygopetalum View Post
I have an occasional wine cooler or glass of wine during the summer. It did seem to help PN pain a little sometimes but doesn't agree with my blood pressure med and is not worth it for me. I think there could be a real potential for abuse and related problems in self medicating that way...you might trade one set of problems for another.

I don't know how old you are Jiggered. An alcoholic death is not dignified. I live in a senior apartment complex and we have a broad spectrum of tenants. One of my neighbors died a few weeks ago of alcohol related liver failure. She spent the last 2-3 years of her life wearing diapers and occasionally 'escaping' when her husband left her alone. She then either fell down in the street trying to walk to the bar or stood on the corner attempting to flag down a car to drive her. She had been a paralegal.

I hope you find a comfortable solution.
Judi

'Only the good die young'...trying hard not to make any political comments..
Hi, Thanks for your input.
I am 47yrs old. Was in a car accident 2 yrs ago & then about a month later developed Trigeminal Neuralgia. Started taking Gabapentin & then over the course of the last 2 yrs the peripheral neuropathy started & has progressed. I started wearing the Butrans patch, 2 weeks ago & it seems to be helping with the neuropathy.
I've always drank quite abit. I'm a Canadian, I love my beer!!
I have been unable to work in the last month, as I had quite a flare up. That's when I started the Butrans. Over the last month, since I wasn't working I would have a few beer in the evenings. I'm now freaking out cause I have been constipated, from the patch, so I took some laxatives. Well today I noticed my stool was pale colored. NOT a good sign, in the liver dept.
Going to see my Pcp tomorrow & will definately cut out the booze.

Thanks again for your input.
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Old 02-14-2012, 07:10 AM #27
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Jiggered, if the BuTrans patch is causing constipation, try a regular daily dose of miralax. I have had problems with it all my life, (my earliest memories are of mom dosing me with Fletcher's Castoria) and resulting fissures, etc. but several years on miralax have done away with all my GI problems. I consider it a miracle. I am on low dose oxycodone along with my Gabapentin, but my problem far predates opiate usage.
So you find the Butrans effective? Does it have any other side effects? I am considering it for when my 325/5 once or twice a day are no longer effective for what I have to get done.
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Old 02-14-2012, 09:19 AM #28
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several years on miralax have done away with all my GI problems. I consider it a miracle.
Interesting stuff. I don't recall hearing of it before. A little puzzling too. Are you taking it occasionally "as needed", or regularly?

Some information seems contradictory:
Quote:
Polyethylene glycol 3350 may be habit-forming. Do not take a larger dose, take it more often, or take it for a longer period of time than your doctor tells you to.
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000241/
___vs.
Quote:
In the United States, MiraLAX and Dulcolax Balance are sold without prescription for short term relief of chronic constipation, although there is now growing consensus in the medical community that these medications can be taken indefinitely to treat chronic constipation.[citation needed]
http://en.wikipedia.org/wiki/Miralax#Medical_uses
Also of particular interest to us PNers....
Quote:
It has been shown that polyethylene glycol can improve healing of spinal injuries in dogs.[8] One of the earlier findings that polyethylene glycol can aid in nerve repair came from the University of Texas (Krause and Bittner).
....
The injection of PEG 2000 into the bloodstream of guinea pigs after spinal cord injury leads to rapid recovery through molecular repair of nerve membranes.[14] The effectiveness of this treatment to prevent paraplegia in humans after an accident is not known yet.
....
PEG is being used in the repair of motor neurons damaged in crush or laceration incidents in vivo and in vitro. When coupled with melatonin, 75% of damaged sciatic nerves were rendered viable.
Ibid.
Possible neurogenic properties?
Susanne, have you noticed any improvement in PN symptoms?

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Old 02-14-2012, 10:08 AM #29
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Default Re: hi jiggered

Good for you! Take care of yourself. What you are doing by cutting the booze is to help your life. Have a good valentines day, I hope you get lots of hugs. ginnie
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Old 02-14-2012, 10:59 AM #30
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I suspect those treatments are topical. PEG is not well absorbed from the GI tract. In children there is a chance of
seizures or mental side effects with chronic use.

PEG used to be RX only, and labeling for it concerning OTC use
was determined by the FDA I would think.



Quote:
Originally Posted by Dr. Smith View Post
Interesting stuff. I don't recall hearing of it before. A little puzzling too. Are you taking it occasionally "as needed", or regularly?

Some information seems contradictory:
___vs.


Also of particular interest to us PNers....


Possible neurogenic properties?
Susanne, have you noticed any improvement in PN symptoms?

Doc
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