Understanding Peripheral Neuropathy

SwiftTaySwift20

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Here is an article that appeared in yesterday's New York Times concerning peripheral neuropathy. It discusses both sensory and motor neuropathy and has some good information.Swift_TaySwift20HealthThe Many Ills of Peripheral Nerve Damage Sign in to RecommendTwitter Sign In to E-Mail Print Reprints ShareCloseLinkedinDiggFacebookMixxMySpaceYahoo! BuzzPermalinkBy JANE E. BRODYPublished: October 19, 2009 If you have ever slept on an arm and awakened with a “dead” hand, or sat too long with your legs crossed and had your foot fall asleep, you have some inkling of what many people with peripheral neuropathy experience day in and day out, often with no relief in sight. Skip to next paragraph RelatedHealth Guide: Peripheral NeuropathyMore Personal Health ColumnsAnd numbness and tingling are hardly the worst symptoms of this highly variable condition, which involves damage to one or more of the myriad nerves outside the brain and spinal cord. Effects may include disabling pain, stinging, swelling, burning, itching, muscle weakness, twitching, loss of sensation, hypersensitivity to touch, lack of coordination, difficulty breathing, digestive disorders, dizziness, impotence, incontinence, and even paralysis and death.I realize now that I had a mild, reversible bout of peripheral neuropathy several decades ago when a misplaced shot of morphine damaged a sensory nerve in my thigh. It took three years for the nerve to recover, and for much of that time I could not tolerate anything brushing against my leg. One of my sons, too, was afflicted when a nerve behind his knee was injured during a basketball game. He had no feeling or mobility in his foot for nine months, but after several years the nerve healed and he regained full use of his foot.And a good friend was nearly paralyzed, also temporarily, following a flu shot, by a far more serious form of peripheral neuropathy — an autoimmune affliction called Guillain-Barré syndrome, in which one’s own antibodies attack the myelin sheath that protects nerves throughout the body. There are hundreds of forms of peripheral neuropathy. A medical guide describing them, compiled by a team of neurologists at the behest of the Neuropathy Association, fills a booklet the size of a two-year wall calendar.The association, which sponsors research and provides education and support for patients and families dealing with peripheral neuropathy, estimates that the disorder afflicts more than 20 million Americans at any given time. If the cause can be corrected, peripheral nerves can regenerate slowly and patients can recover, although not always completely.But many people never recover. They must learn to live with the disorder, with the help of treatments and devices that can ease their discomfort and disability. With such a wide array of symptoms and causes, getting a correct diagnosis is often a challenge. Worse, frustrated patients are sometimes told, “It’s all in your head.”Causes Behind an AilmentThere are three types of peripheral nerves: sensory nerves, which transmit sensations like pain, touch, heat and cold; motor nerves, which control the action of muscles throughout the body; and autonomic nerves, which regulate functions that are not under conscious control, like blood pressure, digestion and heart rate. Symptoms of neuropathy depend on what nerves are involved. Someone with damaged sensory nerves might not feel heat, for example, and could be scalded by an overly hot bath. Neuropathy of the motor nerves can result in weakness, lack of coordination or paralysis; neuropathy of the autonomic nerves can lead to high blood pressure, irregular heart rate, diarrhea or constipation, impotence and incontinence. The list of possible causes of neuropathy is far too long for this column. They include inherited conditions like Charcot-Marie-Tooth disease; infections or inflammatory disorders like hepatitis, Lyme disease, AIDS, rheumatoid arthritis and lupus; organ diseases like diabetes, hypothyroidism and kidney disease; exposure to toxic substances like industrial solvents, heavy metals, sniffed glue and some cancer drugs; trauma to or pressure on a nerve from an injury, cast, crutches, abnormal body position, repetitive motion (as in carpal tunnel syndrome), tumor or abnormal bone growth; alcoholism; and deficiency of vitamin B12. The most common cause, accounting for nearly a third of neuropathy cases, is diabetes, especially among those whose blood sugar levels are poorly controlled. Half of all people with diabetes eventually begin to lose sensation and develop pain and sometimes weakness in their feet and hands. In people with diabetes, even minor injuries to the feet, if not quickly and properly treated, can result in gangrene and amputations.In nearly a third of cases, no cause is ever found, leaving patients with no other recourse than treatment of their symptoms. Suspected cases are best referred to a neurologist, who should begin by taking a complete personal and family medical history and performing a physical and neurological examination, checking on reflexes, muscle strength and tone, sensations, balance and coordination.A complete workup is likely to include blood tests, urinalysis, a nerve conduction study and electronic measurements of muscle activity. Imaging studies, like a CT scan or an M.R.I., may reveal a tumor, vertebral damage or abnormal bone growth. In some cases, a nerve or muscle biopsy may be done.Relief and RestorationIf the underlying cause cannot be corrected, the goals of treatment are relief of symptoms and restoration of lost functions. Pain control is paramount. Effective relief may come from over-the-counter remedies or a lidocaine patch but sometimes requires prescribed opiates.Many with neuropathic pain have benefited from drugs licensed for other uses, including antiseizure medications like gabapentin, topiramate (Topamax) and pregabalin (Lyrica) and antidepressants like the tricyclic amitriptyline and the selective serotonin and norepinephrine reuptake inhibitor duloxetine (Cymbalta).Vitamin B12 deficiency can be treated with supplements and fortified cereals or by judicious consumption of meats, poultry, fish, eggs and dairy products.And since alcohol and tobacco are particularly risky for people with neuropathy, or a health problem that predisposes them to it, they have every reason to quit smoking and to drink only in moderation. Many patients are helped by physical therapy, occupational therapy and devices like braces, splints and wheelchairs. Railings on stairways and in the bathroom, elimination of tripping hazards like scatter rugs, and improved lighting (including night-lights) can reduce the risk of falls. For those insensitive to heat, a thermometer should be used to test water in a tub, shower or sink. Orthopedic shoes are invaluable to patients with lost sensitivity in their feet or impaired balance. A variety of mechanical aids can make it easier to live with peripheral neuropathy, among them kitchen tools made by Oxo. Those with digestive problems might try eating small frequent meals and sleeping with their heads elevated. Other helpful sources include the book “Peripheral Neuropathy: When the Numbness, Weakness and Pain Won’t Stop” (Demos Health, 2006), by Dr. Norman Latov, professor of neurology and neuroscience at Weill Cornell Medical College; and the Neuropathy Association, 60 East 42nd Street, Suite 942, New York, N.Y. 10165-0930 ( 800-247-6968 , or online at ). The association maintains a list of support groups and of centers that specialize in diagnosing and treating neuropathy.Sign in to RecommendNext Article in Health (32 of 39) » A version of this article appeared in print on October 20, 2009, on page D7 of the New York edition.
 
Thanks Swift_TaySwift20 for posting the article. It is a reminder for me that people like me, who have PN symptoms need to be patient because finding a cause is often difficult and also need to be prepared to accept that perhaps there won't be an explanation of a cause, ever, or any treatment. The part that bothers me most is the "it's all in your head" piece. Initially I've been told my PN symptoms are due to anxiety, muscle tension, stress, etc. and initially I was quick to accept it, because I could blame myself and thought I could very well change my situation. As time went by and I managed to calm down, even my therapist said that my symptoms are not psychosomatic and that my doctor needs to look into this. I've gone through some profoundly stressful situations in my life before and never presented with these symptoms. The symptoms that were caused by anxiety, such as swallowing issues, got resolved quickly, so whatever is still left is caused by some kind of nerve issue. The anxiety developed in response to worry about the sxs - I don't mind I went to a therapist though, because she is helping me to deal with this situation. When I further read about PN, I discovered that neuros are trained to evaluate symptoms in three tiers: first they look at the most common explanations, and eventually they consider the rare ones. Who knows, they may even be trained to consider psychosomatic explanations first, although I have not seen evidence of this in writing. In health care systems where everyone is covered (such as in Canada), this approach could very well be a required cost cutting measure. Also, I think the passage of time is also part of the dx, as neuros need to see how symptoms develop over time. In any case, I've read comments from people who eventually got dx'd with a treatable condition that the diagnostic process took 3-4 years.
 
This is a great post and explains why diagnosing the symptoms described here is so complicated. Mix a complicated problem with all the health care delivery problems and you have a recipe for frustration and confusion. Simple answers are just hard to come by. When time and expensive tests are needed to get more information that still might lead to only speculation and not definitive answers, it is no wonders so many neuros want to oversimplify things just out of practical necessity.Swift_TaySwift20,I hope you are doing well. I still have that darn "palmaris brevis" spasm in my left hand. It has not let up in a year. Literally nonstop 24/7. Do you have any change with your hand spasms? I know you've said you get more stiffness in the winter but is the spasm still going on regularly?Krackersones
 
This is a really interesting article. Thanks Swift_TaySwift20 for posting!And if it helps, I seem to fall in the category of slowly getting better. Although it has taken years! I am up to 5 years.So for the people new to this condition. I expect you will get, at least somewhat, better in time.But it may take a long time. You are in for a marathon.Cheers.-43RichyThe43rd
 
Hi guys,Well....on my side I´ve been living with BFS for over 16 months and by all means I consider myself 99.9% better. Every single symptom has slowly vanished over time. My BFS has pretty much dissapeared, it has been the best lesson of my life, I was capable of rediscover the beauty of life and the infinite power of my mind. Yes, BFS is quite a challenge but a good positive one. Please guys, don't assume the "syndrome mentality" so popular around here, it´s just the wrong way of handling BFS.If you don't believe me, just contact any member of the BFS Class of ´08 and you will see 95% of the members that joined last year are so much better, both mentally and physically. The remaining 5% of members that still gets distressed about this condition are the ones that keep fueling the medical treadmill. Hang on, this will get so much better for all of you real soon.Bye,Eduardo
 
Jro,I guess when one starts understanding how a certain system works then expectations can be lowered accordingly which may bring some peace of mind. ;) This way, you don't take things personally or assume that someone is neglectful or have any agendas but accept the rationale used that is in general, unique to their profession. 43RichyThe43rd:It is wonderful to hear that you are getting better. If you can share what worked for you, please keep posting about it. There are a few cases of PN currently circulating on this board. Wish you continued recovery, you're obviously winning your marathon!Ed:Tx for your encouragement, and your advice. No chance of fueling the medical treadmill here in Canada, no worries about that! :p We eventually (within 6-12 months) get some basic tests and if those are inconclusive and we can walk/talk/count to 5, we're sent home, declared healthy and fit for work. And you know what, I'll take that. :p Kat
 
Jro,I still get the hand spasms on both sides too. Usually after a Starbuck's venti but I just ignore it. I am not looking forward to the colder weather though. We had a week of really cold temperatures and sure enough my hamstrings starting getting really stiff and tight again after doing well all summer.Swift_TaySwift20
 
Actually the reason I made a point to mention that I now have zero worries about this being anything other that BFS, was to emphasize that anxiety over my symptoms has nothing to do with my symptoms intensity these days. If my calves are twitching like crazy, doesn't worry me a bit... if I get a major thumper in my bicep, doesn't worry me whatsoever. So unless the twitching gets super bad I pay it little attention. Nonetheless, the situation is not really improving so I was just wondering if it might in the future. If it doesn't get any worse I'd be ok with it for the rest of my life, but the $50 a month for Carbatrol is a bit annoying.
 
Hey Ed,Same symptoms here.I also experience 'neuropathic' pain.. on some days the pain is so widespread and intense that i almost start to think i have fibromyalgia
 
You can add me to the list of PN people... I was told that I have a "slight neuropathy" by an ALS doc after my EMG had some abnormalities in it (but not the kind of abnormalities consistent with ALS.) In many ways it's reassuring. I have had twitching + atrophy + real weakness (therefore I don't neatly fit into the twitching minus atrophy minus weakness equals BFS equation.) I was told over and over that my symptoms weren't consistent with ALS, but when looking online I couldn't find any other answer. If it's not ALS then what else causes these things?? Turns out quite a lot, including almost countless peripheral neuropathies, they just don't get the same google-coverage as some of the more insidious diseases. Part of me wants to see a neuro who specializes in PN, because when I see the doc who specializes in MND she just says "not ALS, have a nice day" which makes sense, cuz she has people who really have that terrible condition to take care of. But the other part of me just wants to say *beep* it, why spend more time with more doctors? I don't really want to go on any meds other than the ones I need for thyroid replacement and migraines; the side effects and potential risks seem to be worse than what I deal with with this ambiguous PN. Anyways, this is just a good thing to keep in mind for other BFSer. It doesn't have to be BFS or ALS, it could be hundreds of less serious things in between. And for the record, even if I'm not an official BFSer, I still sort of consider myself one anyway! I twitch like crazy, I'm not dying, that's kinda like BFS :)
 
Good to hear from you Andy. I have PN - some confirmed sensory deficits and a weak ring finger. I don't worry about the twitching any more, as it doesn't affect my ability to function, and I don't make a connection to ALS. I'm yet to have a nerve conduction study, but my GP does not believe that anything significant will come out of it. PT said the same. I guess the lesson is that one can have these symptoms and still be OK and functioning well. People may not fit neatly into categories but this doesn't mean that they are doomed. I know I'm not, and glad to hear you feel the same way! :D)Kat
 
Hey Eduardo, I feel like I am marked for life with BFS at this point in time. I've had these BFS symptoms since Feb and the worry and anxiety have been there ever since. I really think I'll have this the rest of my life, yuk!! Some days the twitching is all over my body that it's unbearably annoying, especially at night lying in bed trying to go to sleep. I work out several times/wk and play guitar and this definitely helps to focus away from all the twitching going on. Needless to say, when my fingers are twitching or have tremors, it becomes annoying as soon as I disengage my fingers (hands) from my guitar. Friends and family think this is a very strange syndrome and can't really comprehend how this can go on non-stop or that there's no medication available. My Neuro says I will eventually grow out of it, but I have my doubts based on how I feel right now. Glad to hear yours has cleared up, please pass on any advice you may have.jey
 
Jey--You may not grow out of it, but you will grow used to it. That's IF it's with you forever/for a long time (which is a big "if.") You've noticed that the more engaged you are with music and working out, the less it bothers you. This is the "cure" for BFS that Basso has been preaching for a long time. The best treatment for BFS is to grab life by the balls and do what you love. You'll be too busy to even notice the twitches, and when you do, you'll laugh at how you once let something so relatively insignificant bother you.
 
jey,There are medications available but you should only consider it if your life is really suffering for it. Mine was as you can imagine how life might suffer if you could not sit still or sleep. I'm assuming your suffering is just on the mildly annoyed level which you can obviously just get used to with time. If not, there are meds.Krackersones
 
What is the spectrum of symptoms associated with BFS besides TWITCHING, TREMORS and PARAESTHESIAS??The only symptoms I've experienced are the ones I just mentioned, and my Neurologist stated I had the milder form of BFS (of course he doesn't feel all the body twitching I do).Can anyone tell me what other sensations or weirdness to look out for?
 
Yes I have self diagnosed that mine is all due to PN-I have twitching all over, stabbing/zinging pains, etc...--for 2 yrs now. Now I am on the hunt to find out WHY. I also have had bouts of pancreatitis-unexplained why. I am going in for another EMG and have been told sometimes neuropathy that is associated with some diseases does NOT show on an EMG, for example as in diabetes. I dont have diabetes but have also been told people who may have PRE diabetes can have these symptoms. I havent been told I have pre diabetes either.I do seem to go through waves--weeks of bad twitching, weeks where it isnt bad, same with the pains. I have now recognized it does not coorealate with stress either-ie, when I am not stressed, some of those days can be my worst.
 

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