Originally Posted by Aussie99 (Post 971848)

7 whole years have gone by. Reading this thread was like discovering a time capsule. Life has changed so much.

Memories...like the corner of my mind...lol:D

Originally Posted by Wing42 (Post 37720)

I'll be pretty verbose in my reply in the hope of helping new people to this board.

When I saw the first neurologist about 10 years ago, my forefeet had been on fire for two years. I couldn't walk more than a short distance, and was thinking of applying for a handicapped parking permit. I had severe metatarsal pain (7-8 on a 1-10 scale), to the point where it hurt to use the throttle and clutch pedals on my truck. My feet experienced shooting "electric" pains almost constantly, with a throbbing dull ache in both big toes and in my "Morton's" toes. The skin around many toes was totally numb. Ironically, the skin at the ends of my toes and the top of my instep was excruciatingly hypersensitive. The pain kept me up much of most nights.

It took two years and seven doctors (three PCPs, three podiatrists, an orthopedic specialist) to get a referral to the neurologist. He carefully ran me through an awesome (that is meant sarcastically) series of tests: a few questions, some pin pricks, and nerve conduction, that took about 10 minutes, and talked at me for another 5 minutes. He didn't give my condition a name (my PCP read the diagnosis to me off of my chart a month later) but he said that I would never heal, would continue to get worse until I was totally incapacitated, and that there was no treatment. He did cheerfully tell me that the pain would go away when the nerves totally died, so I had something to look forward to. I didn't accept that then, and neither should you.

Now I am usually almost pain free. I can walk for miles with little discomfort or work all day on my feet. I sleep like a baby. I still have metatarsal pain, but only about a 1 or 2 on a scale of 0-10. I still get some shooting pains depending on fatigue, overuse of my feet (I walk a lot), or other illness at the time. There is widespread mild skin numbness but no totally dead spots like I used to have. I can actually feel the floor when I walk. I have no hypersensitivity. My feet are alive again.

Doctors only know a limited subset of what there is to know about the body and healing, and they have no idea of their large areas of ignorance (what they don't know they don't know). If a doctor learned that PN is untreatable and progressive in medical school, they spend their career not attempting to help cure PN. It's a self fulfilling prophecy…"It doesn't heal, so I won't waste my time, and I'll urge you not to get your hopes up or waste your time." No attempt is made to treat and little attempt is made to diagnose causes because what is the use anyway? They watch you get worse and report the progressive nature of PN to their colleagues, who continue teaching their patients and medical students from closed minded ignorance. Meanwhile, all they feel they can do to "help" is dope up their patients, trying for a little less pain until the nerves completely die or the patient does. The drugs have serious side effects, but if you die sooner, it's a blessing. You don't have to buy into this.

There are many effective treatments for PN, and PN can heal depending on the causes and how much damage was done. No, you cannot regenerate an amputated leg or a nerve that has died back to the spinal column. However, you can usually stop further damage and repair much or all of the damage that has occured. The list of things I tried include acupuncture, Chinese herbs, Iyengar yoga, yucca, garlic, Ginko biloba, DHEA, melatonin, complete rest, pretty radical diet control, exercise in spite of the pain, massage, Chi gong (Chinese "yoga"), and a slew of supplements (see my postings starting near the bottom of http://neurotalk.psychcentral.com/sh...p?t=177&page=2 ). I'm including to urge you to not give up striving for health.

The first thing that helped me was the book "Spontaneous Healing" by Dr. Andrew Weil. It gave me hope, strength to resist the poisonous negativity from my neurologist, and some directions to try.

My big breakthrough was yoga. Within six months of starting yoga classes and daily practice three years ago, I could walk a mile or so, slept through most nights, and had a clear picture of what I needed to do to heal. I'm still doing yoga almost every day, and attend class with my wonderful Iyengar certified teacher twice a week.

Another breakthrough was discovering the predecessor to the old Brain Talk forum. The more you educate yourself, the better you will do in finding a good doctor, dealing with that doctor, and finding your own healing treatments. This forum and its recommended reading and links are by far the best source I've found for learning about causes and cures for PN.

I started dietary changes with an acupuncturist about 10 years ago, and have been refining my diet ever since. We now eat pretty close to a Mediteranian diet. I feel better and actually enjoy food more.

I avoid neurotoxins like they cause PN. That includes insecticides, herbicides, solvents, drugs (even prescription), excess alcohol, any tobacco, and excess caffeine. You can look up all prescription drugs through www.rxlist.com. Look up side effects. If neuropathy, peripheral neuropathy, neuralgia, neuritis, paresthesia, numbness, or tingling is a side effect, it may have caused your PN or be making it worse. Notorious culprits are cholesterol lowering drugs and type II diabetes medications. Don't let your doctor feed you a line of BS. Even if the neurological side effect is rare, you're it. Also, beware of drugs that stress the liver (like acetaminophen). You cannot heal with a sick or a stressed liver. My acupuncturist ascribed my PN to my having a sick liver. One biochemist I read said that he couldn't imagine a person with a healthy liver being sick, or a person with a sick liver being healthy.

I take many supplements and vitamins, and my improvement over the years has been dramatic. The PN started when I was 52, and I'm 64 now but feel better then I did 10 years ago. You can too.

To wrap it up:
•You are responsible for your health, not your doctor.
• Don't accept negativity from your doctor.
• Educate yourself.
• Take considered action to heal based on what you learn about your specific problems, your specific needs, what is safe, and what works.
• If one thing doesn't work, try another and another and another until you find what things and combination of things restore your health.
• Let this forum and recommended books and links be your teacher. We live PN and know a lot that your doctor doesn't.
• Your doctor knows a lot that most members of this forum don't. You need both.
• Find a doctor who listens, is open minded and willing to learn and do research for you. Find a doctor who works for your health like it's very important to them, and wants to heal you instead of anesthetize you until you die.
• Almost all of us with PN can heal, or dramatically slow down the progress of the disease.

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.

Good luck to all of you, and here's to your health. :)

Originally Posted by mrsD (Post 974629)

Red finger tips= a sign of lupus. My drug induced lupus did this.
My ANA was negative however. They are still slightly red, but not like before.(they were a wine color before and throbbed).
Only below the first knuckle. My toes still get red for some parts of the day.

My doctor was alarmed at the fingers symptom. And cautioned that ANA changes and can be normal and then abnormal and cycle.

Originally Posted by SFNgirl (Post 975040)

Thanks Mrs.D for this info. Did you have general neuropathy symptoms and pain along w the lupus?

My doc ordered new labs for autoimmune antibodies, said a special order that will be sent out and will take a month or so to get back. Also ordered paraneoplastic panel and CT scans of chest and abdomen. He continues to think some type of autoimmune process, but steroid infusions did not help. I suspect we may never know but just will focus on pain management

Originally Posted by mrsD (Post 975064)

When this was brewing I had arthritis type symptoms, stiff neck, and generalized pain coming and going everywhere. I had a rash on both arms, for months, that never did anything...no itch no scaling, no broken skin, just ugly. Drug induced lupus is different from real lupus in that it comes from certain drugs... when the drugs are removed the lupus fades. It does not raise ANA levels either.
I had alot of mouth issues, swollen tongue, swelling gums, and canker sores that came and went. I had some sore throats and very stinging eyes. Once I stopped the offending drug, everything started to fade. I only have about 10% of the rash left now 2 months later. No more mouth issues.

The fingers were the almost the last sign though.

I've had PN for over 30 yrs...in feet and hands (carpal tunnel).
Most of it improved after my hypothyroid was fixed. The lupus things were different and really didn't involve my feet and hands very much. It was more full body. I still have some angioedema which comes and goes, but not like before.

My reaction was due to 2 things... the drug induced lupus + angioedema from the ACE inhibitor, so that confused things quite a bit.

Originally Posted by Aussie99 (Post 971848)

7 whole years have gone by. Reading this thread was like discovering a time capsule. Life has changed so much.

Memories...like the corner of my mind...lol:D