Anyone know something about peripheral neuropathy? Friend might have it.

[liberalhistorian]

She said she told her doctor what was going on and he's "checking her out for it", since that's what he thinks she has. She's been having problems for some time now, I know, and she finally went to the doctor.

I've heard of it, but don't really know all that much about it. I know that, like multiple sclerosis, it can be slow-growing and the disease will be different for each person who has it. Does anyone know anything else about it or have any experience with it? I'd like to get some idea of what it is, exactly, and what she can expect. Thanks for any help!

On edit: How is it diagnosed? Is there a specific test or do they just go by symptoms?

[Liberal Veteran]

1. It's basically "pins and needles" and pain in the extremities.

Found in people with circulatory problems, diabetics, and HIV patients fairly often.

Caught fairly early, it can be treated and it is not usually debillitating, but hardly pleasant.

Sometimes it's reversable if a cause is known (such as a particular medication), but it's a slow process.

[liberalhistorian]

3. She's a few months older

than me, almost forty, and doesn't have any of those conditions. What kind of treatments are involved, do you know? She has a lot of trouble walking or using her arms even a little without pain, will that just get worse?

[Liberal Veteran]

6. Here is more detailed information.

What is Peripheral Neuropathy?
Peripheral neuropathy describes damage to the peripheral nerves, the vast communications network that transmits information from the brain and spinal cord to every other part of the body. It may be caused by diseases of the nerves or as the result of systemic illnesses. Many neuropathies have well-defined causes such as diabetes, uremia, AIDs, or nutritional deficiencies. In fact, diabetes is one of the most common causes of peripheral neuropathy. Other causes include mechanical pressure such as compression or entrapment, direct trauma, penetrating injuries, contusions, fracture or dislocated bones; pressure involving the superficial nerves (ulna, radial, or peroneal) which can result from prolonged use of crutches or staying in one position for too long, or from a tumor; intraneural hemorrhage; exposure to cold or radiation or, rarely, certain medicines or toxic substances; and vascular or collagen disorders such as atherosclerosis, systemic lupus erythematosus, scleroderma, sarcoidosis, rheumatoid arthritis, and polyarteritis nodosa. A common example of entrapment neuropathy is carpal tunnel syndrome, which has become more common because of the increasing use of computers. Although the causes of peripheral neuropathy are diverse, they produce common symptoms including weakness, numbness, paresthesia (abnormal sensations such as burning, tickling, pricking or tingling) and pain in the arms, hands, legs and/or feet. A large number of cases are of unknown cause.

Is there any treatment?
Therapy for peripheral neuropathy differs depending on the cause. For example, therapy for peripheral neuropathy caused by diabetes involves control of the diabetes. In cases where a tumor or ruptured disc is the cause, therapy may involve surgery to remove the tumor or to repair the ruptured disc. In entrapment or compression neuropathy treatment may consist of splinting or surgical decompression of the ulnar or median nerves. Peroneal and radial compression neuropathies may require avoidance of pressure. Physical therapy and/or splints may be useful in preventing contractures (a condition in which shortened muscles around joints cause abnormal and sometimes painful positioning of the joints).

What is the prognosis?
Recovery from peripheral neuropathy is usually slow. Depending on the type of peripheral neuropathy, the patient may fully recover without residual effects or may partially recover and have sensory, motor, and vasomotor (blood vessel) deficits. If severely affected, the patient may develop chronic muscular atrophy.


Without knowing the cause of the problem, it's hard to give any kind of rational guesses as to how it will progress, what the treatment will be, or much of anything.

Sorry I can't be of more help.

[liberalhistorian]

9. Wow, thanks,

that's really helpful because I know almost nothing about it.

[gottaB]

2. yes,

my grandmother was diagnosed like that, the best was probably, "polymyeloneuropathy"--essentially her myelin sheaths on her nerves disintegrated.

Her life was full of suffering. She lost the use of her hands, among other things. She had so many afflictions, it's hard to say what was due primarily to the degenerating nerves. She died rather young.

My mother lived in mortal fear for her own health, and still thinks she's going out like that, that she won't live much past 60. I'm not sure how rational that is, but she's had biopsies and believes that to be exceedingly likely.

I won't speak for myself. I guess I don't have any real complaints.

[liberalhistorian]

4. The disintegration of the myelin sheaths

sounds more like multiple sclerosis. Then again, I'm a paralegal, what do I know about this kind of thing? Not much at all, I'm afraid.

[gottaB]

7. well, that was a diagnosis she had for some time

but it was never exactly right. Ever hear of something called Dutch bulb planters disease?

[Snoggera]

5. From diabetes?

MS is difficult to diagnose.

[liberalhistorian]

8. I know MS is hard to diagnose,

but I was curious about how peripheral neuropathy is diagnosed, if there was a test or if they just went by symptoms.

[blondeatlast]

14. My docs (two of them) diagnosed strictly from my symptoms

I checked the NIH site about diagnosis and came up with this:

A detailed history will be needed to determine the cause of the neuropathy. Neurologic examination may reveal abnormalities of movement, sensation, or organ function. (See also entries on the specific nerve dysfunction.) Changes in reflexes and muscle bulk may also be present.

Tests that reveal neuropathy may include:
EMG (a recording of electrical activity in muscles)
Nerve conduction tests
Nerve biopsy
Blood tests to screen for medical conditions, such as diabetes and vitamin deficiency, among others.
Tests for neuropathy are guided by the suspected cause of the disorder, as suggested by the history, symptoms, and pattern of symptom development. They may include various blood tests, X-rays, scans, or other tests and procedures.

Here's the site:
http://www.ninds.nih.gov/health_and_medical/disorders/peripheralneuropathy_doc.htm

[liberalhistorian]

15. Thanks!

It appears it's another one of those neurological conditions that's tremendously difficult, tricky, and time-consuming to diagnose, and for which there's no real cure or treatment. I wonder how many shrinks have been kept in business by people with genuine neurological conditions that haven't been diagnosed and whose docs have given up.

[YellowRubberDuckie]

19. See, I was thinking MS too.

It's hard to diagnose, and sounds like the symptoms a friend of mine was having when she was diagnosed.
Duckie

[caledesi]

10. Tell me about it!

I have had symptoms of MS (we are talking numbness from knees down and extreme weakness; tremore in hands; not able to write sometimes;
cognitive problems;dizziness; loss of equilibrium; fatigue; stress incontinence'; blurry eyesight) These symptoms come and go - thus the term "flare-up" or exacerbation.

When I have a "flare-up," the above symptoms exhibit themselves. I have had three MRIs (cervical and brain). The MRIs showed "lesions/plaques" in my brain. It was described as demyelination.


Do I have a diagnosis of MS? No. The docs DON'T want to diagnose this bec there is NO cure and it is progressive. The only "remedy" are injectables (nasty) which halts the progression.

[liberalhistorian]

11. Sounds to me like a definite

diagnosis of MS, especially with the MRI results and the showing of demyelination. Beats me as to why the docs won't just officially diagnose it for you!

That's different from peripheral neuropathy, though, although they're both neurological conditions; neurological conditions are a real hassle for both docs and patients since there often aren't any definitive tests and no real cures. I just want to know what she can expect, if this is what it turns out to be. I know how hard these things are to diagnose and how much of a pain people go through when their very real and very debilitating symptoms are not properly diagnosed. Docs give up and the patients still suffer.

[blondeatlast]

12. I have it.

Mine is fairly mild, especially considering that I've taken insulin for 37 years.

It isn't that bad for me, I get numbness and tingling in my fingers and toes and on very rare occasions pain in my feet. The pain is intense; like ultra hot needles in a nerve, but as I say, it is very rare and lasts only a second or two--but it stops me dead in my tracks.

I understand there are treatments, but I don't feel the need (yet) to resort to them. I've heard that Capsazin (sp?) works, but since part of the problem is numbness, that it needs to be used under a doctor's care to avoid chemical burns.

It can have devastating side-effects owing to the loss of feeling, but that is in severe cases. I'm fortunately nowhere near that scenario yet.

Hope I've been of some help; feel free to ask for more if necessary.

[liberalhistorian]

13. Thanks for the info,

sounds like you're lucky to have just a mild form. My friend is in a lot of pain, though, she can't walk very much or use her arms much without a lot of pain, and she's in constant pain, especially at night. I hope there's something they can do for her, at least as far as pain relief is concerned.

[blondeatlast]

17. I hope so too; I know that some cases are terrible.

I know those few seconds of pain that I have are nearly mortifyingly painful.

This site lists clinical trials on it, if she might be interested.
http://clinicaltrials.gov/search/term=Peripheral%20Neuropathy

Give her a hug from someone who knows her suffering even just a bit.

[BattyDem]

16. I have it

For me, it is very debilitating and painful. Frankly, it has totally f*cked up my life. I've had countless tests, treatments and medications. Most don't help at all. Some help a little, but the relief is never long term. Eventually my body would adjust to the medication and I'd become immune to its effects, so they'd have to increase the dosage. Too many years of too many medications has eaten away my stomach and esophagus, so now I have that to deal with as well.

Every case is different, so just because I have certain problems, that doesn't mean your friend will have the same experience. I've gotten worse over the years. I am in constant pain and my legs literally feel like they're on fire all the time. If you were to touch my leg right now, it would feel red hot to you ... and that's on the outside. It's worse on the inside. I get sharp, stabbing pains in my extremities, as well as pins and needles, numbness and burning. This past year, I developed a tremor in my right hand, which is why 90% of my posts are edited. With the numbness in the left hand and the tremors in the right, it's tough for me to type so there are always mistakes that I have to correct.:)

Here are some Peripheral Neuropathy (PN) and Chronic Pain links I've collected over the years. I hope they help. Good luck to your friend. :)

National Institute of Neurological Disorders and Stroke Peripheral Neuropathy Information Page

National Institute of Neurological Disorders and Stroke Peripheral Neuropathy Fact Sheet



Department of Neurology at Massachusetts General Hospital: Brain Talk Communities.
This is their current forum

These are the links to their archives. I've included them because the boards are worth reading - there are so many different stories about symptoms, treatment, medication, etc. It'll give you an idea of what people with PN go through.

Peripheral Neuropathy Forum Archives 1
Peripheral Neuropathy Forum Archives 2



NeurologyChannel.com

Peripheral Neuropathy Wellness Center

MEDLinePlus

The Neuropathy Association

American Chronic Pain Association

National Chronic Pain Outreach Association

National Foundation for the Treatment of Pain

The American Pain Foundation

[BlackVelvetElvis]

18. My mother has it

She's in constant pain and drugs do not help (she's on Neurotin). She has had these symptoms for 9 years now and was recently diagnosed. She had a nerve test taken several years ago, but nothing showed up until it got really bad. I hated the way the doctors treated her; like it was in her mind. The only thing that helps her deal with the pain (but not remove it) is Xanax. It has recently gotten worse. She calls it "hell".

[blondeatlast]

20. Xanax helps her?

I have a prescription for it but very rarely take it.

I go through periods when it occurs more often than others; I'll ask the docs who DO admit I have it (after 37 years of insulin, it would be hard NOT to have it.

[BlackVelvetElvis]

21. It doesn't help her pain

it just helps relieve her anxiety enough so that she can rest. Beer sometimes does the same thing. She likes the cheap stuff.

[BattyDem]

22. I know how she feels

I've had it for nearly 13 years, but I wasn't diagnosed until about 6 years ago. Most doctors treated me like sh*t! They acted like I was some kind of nutjob who was looking for attention. One doctor (at a very prestigious hospital) had me walk about 10 feet, then he asked me a few questions and he examined my cane for "wear and tear". That was the exam. I never got undressed. He didn't even do any of the basic neurological tests (eyes closed, arms out, stand on one leg, etc). The man never touched me ... yet he told me that I needed to see a psychiatrist because there was nothing physically wrong with me! :grr: Apparently he has psychic abilities that allow him to diagnose people without even testing them. :eyes:

[liberalhistorian]

24. See, that's the main problem with most

neurological disorders, they're so hard to diagnose initially that you end up going to several different doctors who, because they can't definitively diagnose it with a specific test, tend to fall back on the catch-all, cover-their-ass "it's all in the mind" bullshit.

I knew someone with MS who had it for EIGHT YEARS before it was finally properly diagnosed. The doc who diagnosed her finally said she should sue the pants off the other docs who'd ignored her or not bothered to do their jobs right.

[AlienGirl]

23. Dextromethorphan (DXM) is being studied

Dextromethorphan--a cough medicine, OTC as Delsym--has been helping people in clinical trials. It's an NDMA antagonist, and it and similar medicines are being studied for peripheral neuropathy associated with both diabetes and MS.

Anecdotally, one of my friends had peripheral neuropathic symptoms and got great relief using Delsym in the dosage recommended for cough. Her neurologist said it was safe even for long-term use.

Good luck!

Tucker