STICKY - Important Links to Useful websites
 

Here's the website for the spreadsheets and charts. These are to keep track of tests, as well as to help direct tests for diagnostic purposes.

I suggest folk always ask doctors for copies of labs, xrays, and other studies, before leaving the office. Never leave without them. Then put them on the charts, and you will be able to carry them to other docs, and be able to see trends. Trends are usually missed by our doctors, who have pages of separate labs.

Good luck with them!

Also, there's a sheet for keeping track of medical expenses, and one for medications.

www.lizajane.org

You are soo right...
 

besides, if you include a no-other terms accepted letter to the doc you're seeing when you first see them, I can bet you'll get THE letter addressed to YOU w/cc's to all the other docs. Sometimes it can really work. Staff gets soo flustered that you are DEMANDING at the start, they just do it and forget to charge...works for me on occasion.

Loved your comments in forums BTW - go get them lady Tiger! - j

Guide To Peripheral Neuropathy
http://arthritis.about.com/od/nervep...pathyguide.htm

Mayo Clinic - Peripheral neuropathy
http://www.mayoclinic.com/health/per...opathy/DS00131

MedlinePlus Medical Encyclopedia: Peripheral neuropathy
http://www.nlm.nih.gov/medlineplus/e...cle/000593.htm

Peripheral Neuropathy Fact Sheet
http://www.ninds.nih.gov/disorders/p...neuropathy.htm

Peripheral Neuropathy and Neuropathic Pain: The Facts
http://www.neurocentre.com/

Peripheral Neuropathy - a patient's guide
Dr. Geoff Green - Physician
http://www.medic8.com/healthguide/ar...europathy.html

Peripheral Neuropathy
Explanation regarding this problem with the functioning of the nerves
http://www.medicinenet.com/periphera...hy/article.htm

The Neuroopathy Association: Peripheral Neuropathy Support & Research
http://www.neuropathy.org

Why Does Peripheral Neuropathy Cause Pain?
Steven Scherer, M.D., Ph.D.
http://www.charcot-marie-tooth.org/about_cmt/pain.php

Understanding Peripheral Neuropathy - the Basics
http://www.webmd.com/content/article/7/1680_53887.htm

Bobbi, LizaJane: thanks for getting...
 

things rolling. I stillhave to dig thru my unfortunate 'info' piles. I'm hopeing to save the more esoteric.

But, Has anyone, please saved that deramatology/skin/nerve/vascular/lymph whatever site for reference - I can't find in my vast memory bank, always 'assumed' BT 's here, no-problem.... Helllup? - j

Sorry, I don't have that one--
 

but here's a good list from my databases, all of which were in one "sticky" or another on Braintalk (1):



The Neuropathy Association:

www.neuropathy.org

TNA has an index of types of neuropathy. At the site click on one of the categories, such as "Immune Neuropathies", and you get a pdf document including epidemiology, symptoms, risk factors, laboratory signs, prognosis . . .very good starting point for understanding various neuropathies.

http://www.neuro.wustl.edu/neuromuscular/naltbrain.html

This is the diagnostics entry point for the huge neuromuscular conditions database at Washington University of St. Louis' medical website. It is written primarily in outline form, and mostly for medical professionals, but it is extraordinarily comprehensive; going through the links and sub links reveals a wealth of info on neuropathy (and other neuromuscular conditions).

http://www.aafp.org/afp/980215ap/poncelet.html

The famous Poncelet protocols. Outside of neurology textbooks, this article has become the "gold-standard" guidleine for many physicians and neuros for investigating the causes of potential neuropathies. The flow charts are particularly instructive (and good to show ingorant physicians).

http://www.thecni.org/reviews/13-2-p07-treihaft.htm

One of the best articles I know written about small-fiber neuropathies, which can be difficult to diagnose, as "standard" test for neuropathy often come up "normal" and fail to reveal them (and meanwhile patients suffer). The reference list is excellent--it includes many of the seminal papers on skin biopsy, autonomic testing, and small-fiber vasculitis and other causes of small-fiber dysfunction (these can themselves be investigated if one wants).

http://www.questdiagnostics.com/hcp/...eralNeurop.htm

A small but dense clinical application paper about laboratory tests to investigate causes of peripheral neuropathy. Dr. Latov heads the Cornell Weill Center for Peripheral Neuropathy in New York City, and he and his staff may be the world's leading experts on immune-mediated neuropathies (not that they're slouches in other realms, either). (All docs there are both researchers and clinicians--and, I can tell you from personal experience, and informed patient can have great discussions with them.)

http://www.dcmsonline.org/jax-medici...uropathies.htm

Another good paper--this one form Dr. Alan Berger and his colleagues at Jacksonville Shands. It provides a good overview of diagnosis and treatment options for various kinds of neuropathies, and suggests a particular categorizing method to understand them.

http://care.diabetesjournals.org/cgi...full/26/5/1553

If you ever wanted to understand diabetic autonomic neuropathy, this article's for you. In fact, Dr. Aaron Vinik is probably the world's leading expert on diabetic neuropathy of all kinds, and googling his name can keep you busy for months. (This article has a reference list one could choke on, but it contains almost every important paper on diabetic neuropathy written in the last 30 years.)

http://www.diabetesforum.net/cgi-bin...content_id=341

An excellent and comprehensive overview of diabetic neuropathy from an unlikely source--Gopi Memorial Hosptial in India.

[url]http://www.neuropathymd.org/topical/18/Neuropathy%20and%20Monoclonal%20Gammopathy.pdf#sea rch='Latov%20Monoclonal'[url]

Another Latov article on an often overlooked generator of neuropathy--para or M-proteins in the blood, sometimes related to blood dyscrasias.

Liza Jane's spreadsheets have already been posted above--and I highly encourage their use.

And--for those who like to look up many conditions in one place, I highly recommend the Emedicine series of articles; just go to emedicine.com. You have to sign up as a user, but then you can peruse the database. The material is dense--written for medical personnel, again--but highly comprehensive.

So hopefully this will be a good start, and others should feel free to add to it--either general articles or those on more specific conditions.

i posted on forum feedback last night asking someone to sticky up in the epilepsy forum an excellent thread with information for new posters. we always had it as a sticky before.

this morning i went to epilepsy and there it was, all sticky. so someone should ask to have this thread stickied also, it certainly has excellent information.

folks who did older stickies
 

Is there anyway to get a link to Rose's B12 file here, or JCC's gluten file. Or Wings' road to health file?

Perhaps people have them on a word document and can get to them?

What people can do to have them online in a way that can always be reached...go to www.lizajane.org. You'll see a link that let's you upload anything you want to upload. You can upload the document with all the information. Then people can still reach it through lizajane, even when BT is down, and your own computer has crashed. It won't get lost again...

Rose's B12 Website
 

Yep that's right. After a nudge from me today, Rose is starting her own website about B12 deficiency. It is new and she said to apologize but it's the first webpage she's done. But it looks like it will be good. Keep checking back to it, it's gonna grow now that she has started. I am so appreciative of it.

http://roseannster.googlepages.com/home

Billye

I'm sending Rose a big thank you--
 

--as once that page is finished, it will literally be a life-saver, and hopefully not subject to being "lost", as is the huge compliation of info she has at Braintalk 1. I'm not entirely sure, but I believe her initial B12 thread there went on for something like 660 posts or so. A very important document, and while hopefully it will become accessible again, it's important there will be a seperate place to access the info (like it is with JCC's Gluten File).

The Gluten File
 

O.K. I remembered this file from the other neuropathy website. It's Jcc (Cara's) website about gluten sensitivity and the huge file of info she has on it.
http://jccglutenfree.googlepages.com/

Billye

I don't think I see the link for The Gluten File yet...so here it is.

Also direct links to these pages:

The Neurological Manifestations of Gluten Sensitivity

Peripheral Neuropathy

Diagnostic Testing

Gluten Sensitivity vs. Celiac Disease

At Risk Population for Gluten Sensitivity/Celiac Disease


oops...I guess I didn't advance to page 2 when reading this thread...I didn't see it...thanks Billye!

great!
 

Good for you, Rose...for putting your info on Google!

Here is a copy of a list I made in the past:

I have a new link HERE about medications as well:
http://neurotalk.psychcentral.com/thread161040.html
1) OTC--vitamins/nutrient interventions
2) Drugs used:

I FOUND IT! Eureka! The nerve/skin site! below....
 

http://telemedicine.org/stamford.htm At the left, table of contents, click on 'Anatomy of the Skin'. It is dense, rich and chock full of how nerves relate to other body functions...all of which dovetail into neuropathies completely.

Personal experience on my part is that it well, EXPLAINED A LOT! - j

Mayo
 

Lots of great info on their site, but please do not rely on them for B12 information. It's still not right. In spite of promise after promise over about three years to address it, there is still misinformation there.

rose

My B12 website
 

Thank you (you know who you are) for pushing me. :)

The very basic information is almost there, and I am adding frequently:
http://roseannster.googlepages.com/

And in the meantime, Cara's is excellent. In fact, the way she approaches the subject is different from the way I do, so even though the information is the same it is very important to look at both when concerned about the B12 issue.

rose

Cannabis, Sativex, Marinol, Marijuana
 

This is an exceptionally informative site. They've been adding research (including government research that has been paid for with tax dollars and then hidden when it didn't come to the conclusion they hoped for).

http://www.druglibrary.org/crl/default.htm

I know the individual who has the umbrella site, and he is brilliant and honorable.

rose

A program to heal nerve damage and reduce PN symptoms - Part 1
 

These recommendations will help heal damage and reduce PN symptoms from many causes, such as diabetes, drug or other toxin damage, viral or bacterial attack, nerve entrapment, surgical damage, poor blood circulation, and hereditary or idiopathic peripheral neuropathy. What follows has been learned from years of research. All recommendations have some empirical and/or scientific basis. I urge you to check on each recommendation before trying it. A good way to check is to double click on www.google.com and enter the topic. For example entering “vitamin e peripheral neuropathy” (without the quotes) will generate a list of sources for research results for vitamin E and peripheral neuropathy.

We are each different from each other. Talk with your health care professional before starting any diet, supplement, or exercise program. For most of us, all of these recommendations are safe, but individuals may have conditions or be taking medications incompatible with some recommendations. An example is SAMe which should not be taken by people with bipolar disorder or taking certain mood changing drugs.

This is a special note about skeptical physicians. Your doctor may say something like, “Save your money and your energy. Nothing will help heal your PN. All you’ll do is create some very expensive urine.” In answer to that, everything recommended here has at least some empirical and/or scientific backing for being effective for PN (as opposed to anecdotal or conjectural backing).

Everything recommended here is safe. As far as I know at this point, no drugs are effective for promoting healing for hereditary or idiopathic PN. No drugs provide more than partial pain relief. All drugs have side effects. Side effects are cumulative the longer a drug is taken. Side effects for combinations of drugs are additive or multiply each other. A basic principle of healing is to first do no harm. Nothing recommended here will do harm as far as I know unless special circumstances exist.

So, talk with your doctor first, take his or her specific recommendations if you have a special condition that will be harmed by anything here. But this program gives you the possibility of safely and powerfully dealing with your PN, reducing symptoms, and even healing. If your doctor only recommends drugs for partial symptom relief without a complete diagnostic workup or any possibility of healing, I think the choice is clear. I had two neurologists offer me Elevil or Neurontin at the first appointment, with minimal testing. Neither is 100% safe, and neither is very effective. You can always try drugs after giving this program a chance. However, because of building drug tolerance, it is difficult to stop drugs once you’ve used them for an extended period for chronic pain.

A final caveat is that this does not take the place of medical treatment. Some of us have conditions that require medical care. Examples include diabetes, infectious disease, amyloidosis, etc. Even in these cases, what follows will be helpful.


This program to reduce pain and help heal your PN encompasses diet, supplements, exercise, dealing with emotional factors, and getting the help you need. In our lives, there is a spread effect, where optimizing one thing helps other areas in your life. Good builds on good and bad on bad. If you eat right, you will feel better and will be more willing to try supplements. As you heal you’ll be on a more emotional even keel. That will help you get the family and other support you need. You will be more apt to start an exercise program.

Generally, most research was done using only one factor such as a particular supplement, a diet change, exercise, etc. In the few cases where more than one factor was tested at the same time, a synergistic effect was found where the healing effect was greater than the effects of each factor alone. If you do the program, do the whole program for maximum benefit.

Diet

A PN diet provides the proper amounts and balance of essential fatty acids and is rich in protein, vitamins, minerals, and nerve healing phytochemicals. That is similar to the Omega diet as described in “The Omega Diet: The Lifesaving Nutritional Program Based on the Diet of the Island of Crete” by Dr. Artemis P. Simopoulos and Jo Robinson (Amazon page is http://www.amazon.com/exec/obidos/A...8941114/sr=8-2/ ref=sr_8_2/104-0955084-5711960 ). The book is an easy read and is full of good recipes and daily menus. I easily converted to the omega diet. My blood pressure came down 25 points in a year, and my PN is much better. I think the omega diet is one of the main reasons. A similar PN healthy diet is the Mediterranean Diet ( http://www.americanheart.org/presen...identifier=4644 , http://www.amazon.com/exec/obidos/A...0914342-4696631 ).

The bulk of your calories should come from vegetables, fruit, healthy protein sources, and whole grains. Eat easy to digest protein daily, such as one or two eggs (one yoke a day is OK), fish, tofu, beans. You don’t need meat for every meal. A little, like 4 oz. of lean meat once a day won’t hurt.

Dairy should be in small quantities if at all, like a little yogurt or cheese. Milk allergies are very common and can lead to or add to chronic fatigue syndrome, fibromyalgia, chronic sinusitis, irritated bowel syndrome, acid reflux, and other conditions with an autoimmune component. Most adults cannot digest milk sugar. On the other hand, the bacteria in live culture yogurt are good for your digestion and general healthy, so eat yogurt if you can handle it.

Avoid concentrated refined sugars or pure fructose. They are hard on your liver and pancreas, meaning they are hard on your nerves. A teaspoon of white sugar or honey in a cup of coffee or tea with a meal won’t hurt you. A 12 oz. Coke or Pepsi has 9-12 teaspoons of sugar! A Frappacino has about 20 teaspoons of sugar! That will hurt you. Apple juice is almost as bad. If you must have a sweet drink, mix apple juice ½ with water and ice it. That way, you’ll only get 5 teaspoons of sugar all at once. The best drink is plain water. If you must have sweets, try two Hershey’s Kisses a day. We all need sweet kisses in our lives!

Avoid anything deep fried because the fat oxidizes and becomes filled with all kinds of nasty chemicals. The same is true with hydrogenated or partially hydrogenated vegetable oils. Read labels for this. The only way your body can handle hydrogenated oils is to turn them into cholesterol and free radicals. The SAD (standard American diet) is full of hydrogenated oil. It is in margarine (butter is better for you, not good but better), packaged pastry, chips, some cereals, candies, and many breads. This was the hardest for me to cut out, but I don’t miss that stuff at all now. This is thoroughly discussed in “The Omega Diet.” by Dr. Simopoulos. If you don’t believe her, just look up “partially hydrogenated oil health” in www.google.com . It will make a believer out of you. Thankfully, labeling is improving and more products made with healthier oils are available every day.

The right oils are essential for healing. You should only use olive and canola oil at home. Both help your nerves and your blood vessels. Canola oil is 50% omega 3 fatty acids which will help heal your nerves. Olive oil has cancer fighting components and helps clean your blood vessels. You should have at least 2 tablespoons of each oil daily. You can also get healthy oils with a small handful of nuts a day or some avocado on a sandwich instead of butter or mayo.

The Omega and Mediterranean Diets err on the side of being too starchy for us. Many of us PNers have insulin resistance. Starch acts just like sugar in this regard. An 8 oz. baked potato with or without skin yields more blood glucose than 8 oz. of pure sucrose, and it spikes just as quickly. The same holds true for any white flour product. Avoid starch. What starch you do have should be whole grain with other foods to slow down the digestion of the starch and absorption of the glucose and to supply healthy grain bran nutrients.

It sounds like a lot of don’ts and a lot of depriving yourself, but that’s not the case. I just started substituting one thing a week. It was easy, and the food is delicious. For example, for a typical dinner we'd have grilled salmon, brown rice or a baked yam, , zucchini and chopped onions sautéed in olive oil with herbs, a tossed salad with tomatoes and a dressing of 50/50 of canola and olive oil, lemon juice, pepper, garlic, and feta cheese. For desert, we’ll have some fresh fruit. We drink water or unsweetened tea most meals. Almost every meal at home is delicious unless I mess up in the preparation.

Three other diets perfect for PN are Syndrome X (http://www.amazon.com/exec/obidos/t...=glance&s=books ) , the Zone Diet (http://www.amazon.com/exec/obidos/A...0914342-4696631 , http://www.drsears.com/drsearspages/ ), and the South Beach Diet (http://www.amazon.com/exec/obidos/A...0914342-4696631 , http://www.southbeachdiet.com/landi...0D-D9B4A75063DB ).

These diets are similar to the Omega and Mediterranean diets. They stress controlling insulin resistance and glucose levels. They are more highly structured with menus, recipes, web pages, and many books. If you like structure, any of these three will do for you. If you are on a limited budget or are frugal, all of these are available in most libraries. The new USDA Food pyramid is similar to these recommendations (http://www.mypyramid.gov/ ).

This is the end of part 1. See part 2 below for vitamins, minerals, supplements, emotional factors, lifestyle, and other delightful goodies.

A program to heal nerve damage and reduce PN symptoms - Part 2
 

Dietary Supplements and Herbs - Updated February, 2006

As we age we do not digest and absorb nutrients as efficiently as when we were younger. Injury and disease vastly increase our nutritional requirements. Hence the need to supplement our diet with concentrated nutrients.

These supplements have been shown to help nerve function and healing. Much of the research has been done with diabetics and with rats. Generally, what helps diabetic neuropathy helps nerve function in general, and what helps rat nerves helps human nerves. A trend in research results seems to be that what helps depression and memory also helps neuropathy. Beside double blind studies, all of the suggested supplements are supported by clinical experience.

For price, freshness, and quality, I buy most of the supplements below on the internet.

Take supplements at the start of meals to protect the esophagus, except where the bottle recommends taking without food.

Name
Dose Per
Rationale / Comments
------------------
Vit B12
1,000 - 6,000 mcg day
Boosts nerve function. Is required for and dramatically speeds nerve healing. Compensates for possible deficiency. Use sublingual methylcobalamin if available, or 1,000 mcg of cyanocobalamin if not. Take IN ADDITION TO the B-complex. Up to 36,000 mcg/day injected are prescribed in Japan for PN.
------------------
B-complex
B-50 1/day
Needed for energy, nerve function, nerve healing. A B-50 formulation is about twice as strong as a regular B-complex. Two B-50s or one B-100 is at the upper safety limit. Take with breakfast so it help your body utilize your food all day.
------------------
Folate or folic acid
Up to 1200 mcg. 1/day
An important component in nerve function, shown to be deficient in many cases of neuropathy. Helps fight depression and bipolar disorder. Check the folate level in your B-50, and supplement with enough to bring your folate intake to 800 - 1200 mcg/day. Men with neuropathy need more than women. If it doesn’t help within about six weeks, the amount in your B-50 should be sufficient.
------------------
Vit C
250 mg./day. The latest research is that this is all we can use. Not needed if you eat a good diet since almost all fruit and veggies have vitamin C. Antioxidant, heals nerves.
------------------
Vit E mixed tocopherals.
400 iu /day
Antioxidant, heals nerves. More than 400 iu of cheap sythesized l-alpha-tecopheral can cause heart problems. Formulations with plenty of gamma-tocopherals and are heart and nerve healthy. Is a blood thinner. Ask your doctor if you take prescription blood thinners.
------------------
Acetyl-L-Carnatine
500 mg. 2/day
Heals nerves, reduces pain, improves memory, elevates mood and increases energy. Works with Alpha lipoic acid. 3,000 mg./day heals nerves and reduces pain over a year's use in several studies. That would be very costly, but worthwhile if you can afford it.
------------------
Alpha Lipoic Acid
800 mg. day
Antioxident. 800 mg./day is prescribed in Europe for PN. Help all tissue repair and nerve function. The only antioxidant that gets into neurons because it is both fat and water soluble. Works with the Acetyl-L-Carnatine
------------------
SAMe
400 - 1200 mg 1/day on an empty stomach
Methyl donor. Potent antioxidant. Help vitamins and enzyme systems work. Fights depression, aids sleep, anti-arthritic. Helps liver detoxification. Ask your doctor if you have bipolar disorder because it can increase manic phase symptoms. Expensive, so start with 1200 mg/day, then taper to 400 or 800 mg. after two weeks.
------------------
Calcium/Magnesium
500 mg. Magnesium 2/day
Nerve and muscle function, bone strength. Magnesium helps stop twitches, cramps, and fascilations, reduces pain, lowers blood pressure, and prevents heart disease. Take a formulation of easily absorbed acid salts or chelates. Potassium, calcium, and magnesium are all required for muscle and nerve function. Potassium is in most fruit and vegetables. Too much Ca/Mg can cause kidney stones. The proper ration is two parts of elemental calcium to one of magnesium. A caution: magnesium citrate is a potent laxative. If you start supplementing with magnesium and get the runs, try another formulation or cut down the amount.
------------------
Fish Oil
1000 mg 2-3/day
Antioxidant. Promote joint health, circulatory system health. Anti-inflammatory, anti-arthritic. Omega 3 fatty acids. Specific for neuropathy. Lower blood pressure. Moisturizes skin and makes hair shiny. Is a blood thinner. Ask your doctor if you take prescription blood thinners.
------------------
Flax seed
2 tbsp. day
Omega 3 fatty acids. Helps your digestion, blood circulation, general nerve and muscle function. Flax seed has lignins which provides cancer protection.
------------------
Milk thistle
200 mg-70% 3/day
Stimulate and promote liver detoxification. Use only if needed: if the liver is sore or if you were exposed to toxins or drugs.
------------------
PB-8 or other probiotic formula.
1 or 2/day
Probiotics-ensure good amount and healthy balance of intestinal bacteria. Healthy intestinal bacteria produce many nerve essential compounds. Live culture yogurt is a probiotic that has the same beneficial effect, if you can handle the small amount of milk sugar in it.
------------------
Coenzyme Q-10
50 mg, 2/day. Necessary for muscle and nerve function. Compensate for depletion caused by some drugs such as statins.
------------------
DHEA
50 mg. in morning on empty stomach
Promotes healing, energy, libido. Most people over 50 need to supplement with DHEA. Recommended by Life Extension Foundation for peripheral neuropathy.


Exercise and massage

Exercise is critical. Without exercise you will not heal and your health and nerves will deteriorate. Exercise stimulates the heart, lubricates the joints, breaks adhesions in the tissues, stimulates the growth of capillaries, stimulates the nervous system, stimulates the glands, and promotes healing. Medical science has determined that movement heals, even immediately post operative. Do what you enjoy and do what you can every day. If your balance is bad, walk if you can. Your balance will get better.

Decide that you are not going to be decrepit anymore, and do something about it.

Exercise should be pain free except for neuropathic pain which sends false signals that can be ignored.

Massage offers many of the benefits of exercise. It improves circulation, stimulates and helps heal the nerves and muscles, and helps maintain an optimal hormonal balance. Electrical stimulation is a type of massage that has show powerful pain relieving and healing effects clinically and in the laboratory with animals. I’ve had great results with “The Rebuilder” ( www.rebuildermedical.com ), but many of the lab studies were done with TENS (transdermal electrical nerve stimulation) units (http://www.google.com/search?hl=en&l...hy&btnG=Search ). Whirlpools with cool water are soothing, as are gentle self massage with gentle cooling crèmes. I make my own using ¾ Blu Emu crème and ¼ Ben Gay.

Stretching is also important to open the joints and prevent the onset or progression of osteoarthritis. I did yoga for years and recommend it with the right teacher. I’m now doing the program in “3 Minutes to a Pain Free Life” http://www.amazon.com/gp/product/074...lance&n=283155 ) plus some daily yoga for a 20 minute morning stretch routine. Stretching does not take the place of exercise, but it is equally critical as we age and deal with chronic pain.

A program to heal nerve damage and reduce PN symptoms - Part 3
 

Emotional Factors

The biggest obstacles to effectively dealing with your PN are resignation and cynicism in you and your physicians. Hope and resolution to make the most of your situation will empower you and make you strong, happy, healthier, and give you control of your life.

Fear, anger, resentment, and other strong emotions make our symptoms much worse for days or longer. With the PN constantly there, it's easy, but harmful to feel sorry for ourselves and focus on the negative. Anger or fear cause the flight-or-fight syndrome resulting in vasoconstriction and exhaustion of ACTH and other healing hormones. Blood pressure goes up. Homosystine levels go up and start constricting our blood vessels and hurting our nerves. We sleep poorly and eat poorly. We are snappish and whining to others who we need for love and support. Our doctor's don't want to see us. We have a tight, defensive attitude toward the world and don't have the hope or energy to do what we need to do to better our lives.

When we focus on hope and healing we make things better. Our blood circulation is optimized and our hormone balance fosters healing. Blood pressure goes down, we sleep well, eat well, and gather love and support. Our doctors try harder for us. We are curious and participate in finding and implementing our own cure. We naturally do things that heal us and make us feel better.


Getting the Help You Need

We cannot do it alone. We need our doctors, our families, each other. Mobilizing the support we need is addressed above in the emotional factors section. If there is a support group near you, join it. Stay active in this forum. Let your family and caregivers know how much you love them and appreciate what they do for you. If you don’t feel love and appreciation for your doctor, keep looking until you find one who is worthy.

Part of the help we need is to learn from others. This forum is a good starting place. The expertise that many PN Forum members have developed is amazing, far more and far deeper than my understanding. I rely on them, and on you. People thrive on your taking their ideas and knowledge and helping yourself with them, so don’t be a stranger.

Educate your family. They would rather hear what you learned than what hurts for the umpteenth time. Share your knowledge, and they will help you put it into action.


Conclusion

These lifestyle changes and supplements can only help, but be patient. If you change your diet and take the supplements, you will start noticing improvement within a month and continue to improve...not necessarily a cure, but you’ll feel better and hurt a lot less. I’ve been thrown a few time by setbacks and regressions, but they have been temporary and I’ve been in less pain and have better balance, feeling, and strength from one year to the next. You can too.

There is much cause for optimism. You are a miracle of creation. Your body has its full complement of DNA that evolved over billions of years and makes us the most successful large animal in the history of this planet. That DNA represents all the knowledge your body needs to be healthy and vibrant. If you are religious or spiritual, you might consider that DNA to be God's gift to you, and God's way of insuring your health. You have been healthy for most of your life and there is no logical reason you cannot be healthy again. Every molecule in your body will be replaced within a year, so it isn't like you are an unchanging rock. In the next year, the new you will be either sicker or healthier...nothing is cast in stone.

Your worst enemies are cynicism, despair, and resignation. They stop you from doing healing things and getting the help you need and make happiness and fulfillment impossible. You are on the right track and will prevail if you continue learning and trying different things. If you set up the right conditions by such things as eating right, taking supplements you may need, avoiding toxins such as insecticides or some drugs, and cultivating love and tranquility, your amazing body and spirit will naturally heal. Your hope, optimism and energy will guide you to the people you need to help you and the knowledge you need to heal.

Suggestions for those you find it hard to sleep.
 

I asked our members here if they had any tips that may help me sleep, here are the the results -

Melatonin - You can buy it over the counter in the USA.
Magnesium - It loosens muscle tension.
Advil PM
Benadryl (diphenhydramine) OTC antihistamine
hops are effective and safe, they are related to the cannabis plant.
Restavit sleeping tablets - doctors script not needed.
Valerium - available at shops that sell suplements.
I found that the combination of Valerium and Magnesium really helped me get a good nights sleep.

*** Just to play on the safe side, i would ask my doc if any of the above is ok to take with any medications you are currently taken ***
.................................................. .................................................. .................................................. .
also from Rfinney

Recognize that the sleep system tends to right itself after a few nights of insomnia, if you do not adjust your schedule.Set a regular bedtime – and keep it. Your body needs reliability.
Less is more. Keeping your wake-up time constant but going to bed one hour later will help 25% of insomniacs within one to two weeks. Prepare to feel sleepy at times and avoid driving then. After two weeks, add back the time in half-hour increments.
Look on tow or three nights of insomnia as a gift – time to get done all you have to get done. Insomnia may be functional, a signal that you need to attend to whatever woke you up.
Put sleep in the background of your life. Don’t monitor it, don’t evaluate it. “Put it in an envelope and don’t open it for two weeks.”
If you’re an adolescent or student who has difficulty getting up and functioning in the morning, your insomnia may be a sleep-phase insomnia. Maintain your wake time and immediately apply bright light for at least 15 minutes to reset your clock. Progressively move your sleep time earlier and follow wake-up with a strong pulse of light.
Another way to deal with sleep-phase problems: reset your clock by taking melatonin four hours before bedtime. Again, move up your bedtime a little bit each day.
If you are an older adult troubled by early morning awakening, you may need to reset biological rhythms and phase-delay bedtime by going to sleep one hour later: Do nothing else to correct your sleep problem.
Get more exercise – physical and mental. It primes the sleep homeostat. Sex, among, other things, is a great exercise.
Jack up your body temperature with a warm bath before bed. Exaggerating the normal drop in body temperature that accompanies lying down helps sleep.
Learn simple meditation and practice it before bedtime; it cuts down nervous system arousal.
Keep your bedroom dark, especially as you get older. Even small amounts of light and noise can disturb sleep as you age.
If you awaken in the middle of the night, use the time for creative problem-solving. The “bleeding” of unconsciousness into wakefulness makes thought less rational and freer at this time.
You can take the sting out of a bad night with the judicious use modafinil (Provigil), a stimulant developed to help narcoleptics stay awake during the day. Taking it after a sleepless night helps ease anxiety about insomnia and primes the sleep homeostat.

DON’T’S
Don’t fight insomnia. The homeostat makes sleep a self-reparative system – if you stay out of its way.
Don’t worry about the consequences of not sleeping. Worrying about insomnia can create insomnia.
Don’t overheat your environment. Sleep loves cold. Keep your bedroom cold but load up on blankets.
Don’t sleep with your pets. Animal dander can create allergies that manifest only at night, and the movement of any pet on your bed can wake you up.
Do not sleep late or nap to make up for a bad night. It de-primes the sleep homeostat and reduces the need for sleep the next night, setting the stage for recurrent insomnia.
For the same reason, don’t make up for an acute bout of insomnia by going to bed early.
Do not try to sleep by drinking alcohol. Yes, it’s a great relaxant – but it is metabolized so quickly it creates rebound insomnia; it’s so fast acting you’ll be up in four short hours.
Don’t stay in bed waiting for sleep. It’s not true that the more time you spend in bed , the more sleep you’ll get.
Don’t catastrophize. While you are taking steps to repair your sleep system, abandon the notion that you can’t function on less sleep; sleeping less as therapy wont’ feel good but it will re-prime the sleep homeostat.
Be careful with caffeine: Limit yourself to one cup of coffee in the morning. At age 18, caffeine has a half-life of 4.5 hours, which increases with age. Gradually eliminate caffeine altogether if you have continued trouble sleeping.

If anyone has anything else that have shown good results are very welcome to add to this.

directory of open access journals
 

A good recent article giving a neuropathy overview--
 

http://www.bmj.com/cgi/content/full/324/7335/466

(I know I've seen this article before, and thought it was already here in the Stickies, but apparently it was not before now. Thanks to Dahlek for pointing it out.)

Another Neuropathy outline that's useful:
 

http://www.apctoday.com/article_page...AID=4499&IJID=

-j

The post above to a link ....
 

doesn't connect....so trying again!

http://www.apctoday.com/article_page..._Article1-fig1

Hope this works. - j

Adding a site?
 

http://www.eprom.pitt.edu/UL_media%5C149993684.pdf
Worth a look-see? - j

Interesting article
 

Finally! Work is being done to identify our pains.

http://www.medicalnewstoday.com:80/m...d=65639nfid=nl

It's gonna take a while, but we are becoming a true medical 'condition'? YES!

Correction to above post
 

the site is at:
http://www.medicalnewstoday.com:80/m...=65639&nfid=nl
Whew! let's see if this works? - j

YES it does! - j

A simple complete PN discription
 

http://www.medifocushealth.com/NR021/index.php

It's long-ish but easily asorbed. - j

About pain and pain meds
 

From AARP magazine
http://www.aarpmagazine.org/health/prisoners_pain.html

Guess they have dilemmas as well. - j

Shoes and PN
 

The topic of shoes came up so I'll continue the discussion with this fairly exhaustive posting.

This is a summary about shoes to maximize your comfort, minimize pain, and avoid damaging your feet and nerves.

1) Shoes should be roomy in the toe box, snug in the heel area, and give good support. There should be NO squeezing of your toes or the metatarsal heads (the foot just behind your toes). Be sure there is at least a thumb width between your toes and the front of the toe box. The sides where the laces insert should be parallel or slightly in, indicating that there is enough room for your instep (the middle part of your foot). You don't need an arch support. If you have flat feet, an arch support will put undue pressure on your arch, making the PN in the area worse. If you have high or medium arches, a little rise in the arch area is OK as long as it is comfortable.

2) Our feet spread with PN so expect to need wider than you used to wear. The brand you've always worn may no longer be right for you. I went from 10 1/2 D to 11 EEEE. I used to run in Asics, but no longer can wear Asics (or run).

3) Try shoes on in the afternoon when your feet are a little bigger, or whenever your feet are at their largest. When trying on the shoes, use the thickest sock you're likely to wear with that shoe. If your feet are different sizes, go for a good fit on the bigger foot. You can always add a thin insert for the smaller foot.

4) Acrylic socks are best. Acrylic doesn't compress so they give cushy comfort. Acrylic dries quickly, keeps your feet warm even if wet, and wicks moisture away. Next best are nylon/polyester blends, or wool. A LITTLE cotton in the blend is OK. AVOID COTTON SOCKS. They compress during the day, take forever to dry, and are cold when wet. When I used to run and backpack, cotton gave blisters. This is not just my opinion. It is what I learned in Sierra Club classes and is agreed to by Walking Magazine and Backpacking Magazine.

5) Fit is much more important than brand or cost. Shoes are made on a form called a last. Each brand uses their own last, so if you find a model that fits you, other models of that brand are liable to fit you. SAS, Spalding and New Balance work for me, so I don't waste my time on Florshiem or Nike (for example).

As a cost example, Tom McCann shoes in the wide widths from K-Mart work great for me as dress shoes, much better than $200 Italian shoes with a narrow toe box.

6) Walk around in the shoes at the shoe store until you are absolutely sure there are no places the shoes are tight, press, or rub.

7) Good fitting shoes should feel comfortable right away. Shoes do not break in, your feet do. To demonstrate this, put on an old pair of shoes you had to break in and that you haven't worn for a year. They will be uncomfortable, demonstrating that it was your feet that broke in, not the shoes.

8) Some brands to check out that work for me are:
- S.A.S. (San Antonio Shoes) Comfort Shoes, top rated by Walking Magazine
- New Balance, also top rated by Walking Magazine. Be aware that New Balance uses at least two different lasts depending on where they are made.
- Knapp shoes are well made and available in widths. Check the web site for where to by them.
- Again, fit is more important than brand.
- Other people have great suggestions that work for them. This is just a starting place. Be willing to try on different brands until you find what works for you.

9) Open sandals are great in warm weather. I like the kind with Velcro adjustments across the toe box and instep so they can be adjusted for socks or not. I get cheap ones from Payless Shoe Stores, Wal-Mart, and Sears. They look great, are comfortable, last a long time, are waterproof, and cost about $20 on sale. Again, fit and comfort are more important than the brand.

10) Don't go barefoot if you have PN. Imagine the pain of stepping on a stone, or hot pavement. You can seriously damage numb feet and not know it until infection sets in. Sore feet are far better than amputated feet.

11) Wear surf slippers at the beach, lake shore, or in streams.

12) I have a hard time telling if a pair of shoes fit when my feet are very sore or numb. You can tell a little by moving the shoes around to check fit, and being sure there is room in front and in the instep. If in doubt, don't buy them.

13) A good professional shoe salesperson is invaluable. Years ago I worked part time in a running shoe store. We were extensively trained and had experience in fitting shoes for individual needs. We also charged full list price.

Shoes are a tough area for us PNers. However, it is possible to get comfortable, protective, reasonably priced, and good looking shoes if you are patient. Once you find what works for you, it will be easier in the future.

Good luck.

Found a couple of interesting papers on PAIN
 

while looking for other things...good general resources:
http://www.reliefinsite.com/download...ment_JCAHO.pdf

and:
http://www.reliefinsite.com/download...tion_JCAHO.pdf

A little lite reading for a hot summer's nite. - j

A Letter to Normals From One in Chronic Pain:


Having chronic pain means many things change, and a lot of them are invisible.
Unlike having cancer or being hurt in an accident, most people do not understand even
a little about chronic pain and its effects, and of those that think they know, many are actually
misinformed.


In the spirit of informing those who wish to understand:

These are the things that I would like you to understand about me before you judge me.

Please understand that being sick doesn't mean I'm not still a human being. I have to spend
most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably
don't seem like much fun to be with, but I'm still me, stuck inside this body.
I still worry about school, my family, my friends, and most of the time, I'd still like to hear you
talk about yours, too.

Please understand the difference between "happy" and "healthy".
When you've got the flu, you probably feel miserable with it, but I've been sick for years.
I can't be miserable all the time. In fact, I work hard at not being miserable.
So, if you're talking to me and I sound happy, it means I'm happy. that's all.
It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better,
or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!"
I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that,
you're welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that
I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes
yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed,
or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo.
I never know from day to day, how I am going to feel when I wake up. In most cases,
I never know from minute to minute. That is one of the hardest and most frustrating components of
chronic pain.

Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating",
"being sociable" and so on, it applies to everything. That's what chronic pain does to you.



Please understand that chronic pain is variable. It's quite possible (for many, it's common) that
one day I am able to walk to the park and back, while the next day I'll have trouble getting to the
next room. Please don't attack me when I'm ill by saying, "But you did it before!" or
"Oh, come on, I know you can do this!" If you want me to do something, then ask if I can.
In a similar vein, I may need to cancel a previous commitment at the last minute.
If this happens, please do not take it personally. If you are able, please try to always remember
how very lucky you are, to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better,
and can often make me seriously worse. You don't know what I go through or how I suffer
in my own private time. Telling me that I need to exercise, or do some things to "get my mind off of it",
may frustrate me to tears, and is not correct.
If I was capable of doing some things any or all of the time, don't you know that I would?
I am working with my doctors and I am doing what I am supposed to do.
Another statement that hurts is, "You just need to push yourself more, try harder".
Obviously, chronic pain can deal with the whole body, or be localized to specific areas.
Sometimes participating in a single activity for a short or a long period of time can cause more damage
and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense.
You can't always read it on my face or in my body language. Also, chronic pain may cause
secondary depression (wouldn't you get depressed and down if you were hurting constantly for
months or years?), but it is not created by depression.

Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now,
that probably means that I do have to do it right now, it can't be put off or forgotten just because
I'm somewhere, or I'm right in the middle of doing something. Chronic pain does not forgive,
nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought,
and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood,
if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better.
This can involve side effects or allergic reactions, as is the case with herbal remedies.
It also includes failure, which in and of itself can make me feel even lower.
If there were something that cured, or even helped people with my form of chronic pain,
then we'd know about it.
There is worldwide networking (both on and off the Internet) between people with chronic pain.
If something worked, we would KNOW.
It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure,
then so be it. I may take what you said and discuss it with my doctor.



If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact,
I try very hard to be normal. I hope you will try to understand. I have been, and am still,
going through a lot. Chronic pain is hard for you to understand unless you have had it.
It wreaks havoc on the body and the mind. It is exhausting and exasperating.
Almost all the time, I know that I am doing my best to cope with this, and live my life to
the best of my ability. I ask you to bear with me, and accept me as I am.
I know that you cannot literally understand my situation unless you have been in my shoes,
but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you, people who are not sick.
I need you to visit me when I am too sick to go out.
Sometimes I need you help me with the shopping, the cooking or the cleaning. I may
need you to take me to the doctor, or to the store. You are my link to the "normalcy" of life.
You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again,
just as soon as I am able.

I know that I asked a lot from you, and I do thank you for listening.
It really does mean a lot.


>>>>>>>>>>>>>>>>>>>>>>>>>>>>

Blood sugar levels and organ damage
 

Ran across this link to Janet Ruhl's website - has some really good info re: blood sugar levels and organ damage.

http://www.phlaunt.com/diabetes/14045678.php

Alkymst

add one more
 

One more to urge caution in diagnoses...
 

This article is chock full of BE AWARES, BE CAUTIOUS and APPROACH CAREFULLY's....

http://www.iasp-pain.org/AM/Template...ContentID=2083

Two aspects strike me about this: 1] the cautions interspersed throughout the diagnositics and 2] the types of doctors and papers, 'names' if you will, that are used as references.

It might be useful tho as it incorporates a variety of neurologic and vascular etc. causes into the medical 'assessment' mix. Extra food for thought? - j

Important Links/stickies
 

Hi All.

This is a link (taken from the Neuropathy Association).

Just click on the link, choose your state, and you'll be prompted from there. You just might find a neuropathy support group in your area.

I don't know how to make this a stickie, maybe one of you can do this???

http://www.neuropathy.org/site/PageS...=support_index

link to IVIG treatments...
 

Dahlek has started a thread on this with information:

http://neurotalk.psychcentral.com/sh...ad.php?t=31082

New diagnostic reference site
 

Tho it's for CIDP and about IVIG, the whole diagnostic and assessment parts of it are key for all of us. The graphics are well, just that...clear about demeyelination and that process, and other aspects about the diagnostic decisions that COULD/SHOULD be made about treatment.

http://www.cidpinfo.com/

Happy reading? - j

RE: A program to heal nerve damage and reduce PN symptoms
 

Absolutely excellent article!!! Thank you from the bottom of my heart! I've been diagnosed a little over 2 months with little help from Drs, fired one recently and have a new Neurologist apt this coming Monday. I am 52, and my PN is fast moving, spread to most of my body with little to no reasons for it that I know of. Very high pain. Will be pursuing toxins, immune problems, back/compression, gluten problems; I have no Diabetes. I've already started some of the vitamins you mentioned; general, folic, C, E, and not enough: Acetyl-L-Carnatine, Alpha Lopiac Acid, Fish oil. I guess I have a good start anyway. Diet could improve & excercize needs a lot of work! The emotional side is the hardest, especially as this has spread so quickly and my life is so entirely turned upside down. You have empowered me and I thank you!!! :hug: Rose Terry RMTerry@prodigy.net

ICD9 diagnostic codes
 

The links below to diagnostic and medical condition codes could be useful in general for insurance purposes and to decipher and clarify medical jaragon.

http://icd9cm.chrisendres.com/

or http://www.icd9data.com/

this has a more general explanation and actually refers back to the 1st site
http://www.medicalcodingandbilling.c...dure_codes.htm

Alkymst