need advice for idiopathic neuropathy
 

I have been diagnosed with idiopathic pn, my blood was good except pre diabetes. I am currently on the diabetes diet. I am 48 and was in perfect health a year ago About 6 months ago I had pain in my toes and arches, finally was diagnosed with pn(nerve conduction test), WIthin about 2 months its gone from my feet to my calves my arms feel weak and fingers seem tingly. It comes and goes. I feel I have a mouse running up and down my legs. I am sick of the doctors telling me it stress. Does anyone feel a weakness throughout their limbs, I am also getting sharp pains in my arms legs(for only a second). I was in perfect health on year ago. I swear I got this from an injury stretching for plantar fasciitis. The neuro does not think that is the case. I overstretched last year, and had terrible pain in my arches for 2 months. Does this make sense, does anyone have any of these symptoms, I am really scared. I feel that this diagnoses is so open ended, there is such a variety of symptoms, and no one really knows, Its hard to sleep because I am so much anxiety any help would be appreciated, Lynn

Hi Lynn, idiopathic???? prediabetes can cause the exact same symptoms as a full blown diabetic, mine was caused because of prediabetes, any neuro that is up to date should know this.
I am curious, how was you tested for elavated blood sugars ? you might want to check your vitamin levels as well, i was low in B12 as well.
Stress & the weather can aggravate symptoms, regarding the weakness in limbs, do you use statins for cholestrol ? as they can cause awfull side affects like that, good that your on a low carb diet already, any type of exercise you can manage will help the insulin resistance as well.

Brian :)

Don't panic!
 

You're in good company here. I was Dx with ideopathetic (sic) PN. :D It just means they haven't pinpointed a cause for one reason or another. Usually they're too lazy to keep looking if you've gone to a Neuro that doesn't know much about this disease process. They assume it's permanent and there's nothing else to do but throw Neurontin at it. So if it's been confirmed it's diabetic in nature your assignment is to get your blood sugar levels under control and begin treatment with B-12 and other supplements known to cure this problem. Yes, cure. Please, see the stickies at the very top of this forum. That would be the very first 3 threads on this page: http://neurotalk.psychcentral.com/forum20.html There's a ton of good info in these stickies dealing with the types of supplements shown to do the job of healing the nerves in many cases of PN.

I looked up your previous posts...
 

I have to say in order for you to know what will work for you, you have to do some homework and try some things.

1) B12 -- you need to be tested and know your number result.
This is easy to correct, and fixes alot of people.

2) You need to take some supplements to sensitize insulin so it will work better for you. Chromium picolinate, r-lipoic acid
are two that work for this. If you want to try these post, and I'll give you doses. Low blood sugar causes muscle twitching in most people. Low blood sugar results from poor insulin actions, and raised levels of insulin. You can have a fasting INSULIN test that will tell you more. In many ways this test is more accurate for insulin problems than fasting glucose.

3) Magnesium is very important to diabetics and prediabetics.
These patients lose it in the urine on a daily basis (not a normal thing), so you have to replace it. I have a huge magnesium thread on Vitamin forum explaining how much and which supplements work the best. Low magnesium levels give twitching and other odd paresthesias as a symptom.

4) Diabetics also lose inositol daily thru the urine. Inositol is very important for insulin resistance. In fact a new form called d-chiro inositol is working for many people. (expensive tho).
Regular inositol works in higher doses and is very easy to take and important for other metabolic improvements (cholesterol).

5) Low Vit D is becoming an epidemic in this country. Doctors are testing for this now, and I suggest you have yours tested.
We have a poster here Mark, whose PN improved with Vit D treatment.

6) Curcumin-- this is the active ingredient in Tumeric, the spice. There has been alot of data coming out that this herb is very good for inflammation. It has shown benefits equal to Lipitor for preventing endothelial damage (lining of blood vessels). It is showing anti-inflammatory actions for Parkinson's patients to reduce progression for them. It has shown anti-inflammatory benefits for those with
arthritis and tendonitis. It helps people with GI inflammation too. The better versions of it
are better absorbed. There is one called Curcu-Gel, at www.epic4health.com that has shown 8 times the absorption of regular curcumin. Also there are forms with Bioperine in them, at various suppliers like iherb.com that are better. Taking plain curcumin with an oil, like fish oil, or with a meal with fat in it will help it work better too. I find this exciting myself...this is new data, and have been taking it for over month myself. I have been able to stop my SAMe during this time, which is a first. (arthritis and pain relief). The Curcu-gel claims to have 13,000 ORAC units...this is a very high antioxidant level and very important as we age.
example:
http://www.ncbi.nlm.nih.gov/pubmed/18403477

These are the first most important things you can try to improve your comfort levels, and help heal hopefully.

diagnosis
 

It's really important that you get a proper evaluation for diagnosis. It's ridiculous to say this is "idiopathic" without looking for an underlying cause first. I've posted a list of tests for sensory neuropathy diagnosis on lizajane.org.

I've also just found a fairly easy, more simplistic list. This is written by Dr Latov, who is very interested in inflamamtory neuropathies. But all the tests can be done by quest, which accepts all insurance.

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


Please read the "stickies" and do all the things discussed to encourage nerve healing. They really do work.

I have improved mine through diet and supplements!
 

Hi there,

I understand your frustration and confusion. I was diagnosed with idiopathic PN about three years ago. I came to this site and met these wonderful people. I took their advice on supplements, diet, and stress.

I have gone from using two canes to get around, to walking two miles a day. My legs are still weak, and I am definitely not the person I used to be, however, I am much better than I was when I was in the worst of my PN.

Stress is a big big factor. I turned my stress into energy to try to find a way to make myself better. I understand the doctors are "trained" in their specialties, however, these people here live with this every day of their lives. They know what works and what doesn't!

I have gone from unable to work, unable to even walk to the bathroom... to now working, (never again able to wear high heel shoes), and living alone.

I wish you the best, and hope that your New Years Resolution is that you take control of this disease and learn to manage it. Don't let it manage you!

Terri

"Except pre diabetes..."
 

In many individuals, pre-diabetes has the same effect as full diabetes when it comes to triggering PN.

You should track down and read the various postings from "Brian". He had PN appear around the age of 49 and was ultimately diagnosed with pre-diabetes.

He dramatically changed his lifestyle (lower carbs, more exercise, etc.) and apparently dramatically improved his PN situation.

Pre-diabetes ultimately may or may not be your root cause, but it's a likely contender. You can use Google to find a number of scientific articles that are beginning to like pre-diabetes with perpherial neuropathy.

Keep us informed.

Seemslikestiches....

That is one of the most inpiring things I have read on this board. Don't let it manage you. You really have a lot to be proud of....great to read that post....

"As a man thinketh in his heart, so is he."
-- Proverbs 23:7 Bible

Be well,

Mark

Idiopathic PN/Neuropathy
 

I have idiopathic Neuropathy, Degenerative arthritis and know what your going through. Mine has gotten worse in the past 3 months. Right now, unfortunatly in Florida, there is not a whole lot that can be done (so I'm told).
My hips, legs and feet are almost completely numb, have the pins and needles tingling feeling in them witch can be extremely painful at times, and my legs also feel as if they are going to give out at any moment. It would be nice to find a doctor that gives a rats butt and would actually try and fix things right rather than one piece at a time.

Ron