I have had small fibre idiopathic PN in my feet now for 14 years and in the last twelve months it has become pure hell. The worse aspects have been violent cramps in my ankles together with increased pain in my toes and burning in the soles of my feet. The cramping is now spreading to my calves. Nothing I have tried seems to help the cramping at all, either orally or topically.
I have been on a long term dose of 3600mg neurontin together with 40mg oxycodone per day in four divided doses. I take many supplements and have done as much exercise as my body will permit. In addition I also have a tarsal tunnel compression which causes numbness in my little and half ring finger on my left hand.

I have been reading here about the possibility of an autonomic connection because I have had bowel and bladder problems for some time now. The doctor has always said he thinks it is due mainly to IBS and a slightly enlarged prostate which I have had examined for anything more serious. I am not convinced though.

I now have another major problem. After a couple of angina attacks after twice walking a short distance faster than usual I have undergone various complex tests only to be told that I have excessive calcium in my arteries and have therefore got to undergo one more deep CT heart scan in London in early January to discover just where the calcium is lying. It may involve me having an angioplasty and a stent so I have been told for I have said I will not consider surgery. Just where this puts me with my worsening PN I do not know. Perhaps someone can offer me some advice as my PN causes me by far the worse discomfort unless of course I try to trot across a road!

BTW some members may remember that I used to post on the old BT board as ASTRA. I have been reading both boards for some time but due to my poor health have not really felt up to posting for awhile. I will try and participate a little more if I can.

Tony

I just wanted to welcome you. I remember you from the old forum. I'm so very sorry that you are suffering so and I wish I had some answers. Maybe someone else can offer something to help you.

Billye

Adastra,

Have you tried stopping the calcium supps.? What worked for me when I was having horrible leg pain and cramps was Magnesium Chloride....2 - 500 mg. capsules a day. Also try a hi-potentcy B-Complex vitamin. Look up Magnesium and all it's benifits for heart and muscle problems. Nacho.

I have been searching for you about this subject. And I cannot find anything
definitive.

Here is an example:
http://www.drcranton.com/nanobacteria.htm

What I see is that there is not alot of correlation between the deposits
of calcium and symptoms of disease. The tests sound alarming, but I don't think they can be interpreted as definitive.

In the meantime, if you suspect atherosclerosis, have the doctors given
you any vasodilating drugs? This is usually the first attempt.
Nitroglycerine or isosorbide remain the first line. Also is diltiazem.

So alternative docs, do chelatation. That has been around for a long time.
The article above discusses that option.

It is thought (and argued) that nanobacteria cause this. They have found
evidence of nanobacteria in kidney stones, for example. But as usual there are arguments on both sides, for and against.

There is a book called The Calcium Bomb...but I have not read it yet, so I cannot comment on it yet.

Sorry you are going thru so much. For that angina, are they giving you anything? You don't mention.

I do know patients who refuse surgery or delay it, and vasodilation therapy does work for them. The arteries can even recanalize..and open up with time.

Sorry you are going thru all this. It is confusing, I agree.

Welcome Tony. New start and all that. I'm very sorry that your health has deteriorated, and hope and trust that you can help your circulatory problems.

From what I've read, it's recommended to take supplemental calcium and magnesium in the ratio of approx. 2 atoms of calcium to 1 of magnesium. Also, if one supplements with calcium and magnesium, it is important to have sufficient vitamin D to assimilate and utilize the minerials. Sufficient vitamin D can be synthesized in your body through about 1/2 hour daily of sun exposure without the use of sunscreen, or one can take about 400 iu of supplemental vitamin D daily.

To avoid kidney stones, do not take too much calcium/magnesium. There is a lot of calcium and magnesium in dark vegetables, legumes, fish, and nuts, a big part of my diet, so I only supplement once a day.

May you have a better New Year.

Hi ya Tony , whilst its great to hear from you again, its not so good to read that your having so much trouble.

Besides Magnesium for cramps, the only other thought that come to mind with muscel cramping was if you are drinking enough water, as muscle cramps can happen when not enough oxygen is getting to muscles via the bloodstream because of insufficient water intake.

This page has good info on benefits from drinking enough water.
http://www.ghchealth.com/water-the-f...lthy-body.html

I hope the new year brings you lots of relief.
all the best
Brian

--you mention having excessive calcium in your arteries; do you also have (if you know) excessive serum calcium?

As a mineral, calcium is kept in very tight check by the body, specifically by hormones secreted by the parathyroid glands imbeded in the thryoid. (They are like four little peas inthe flesh of the thyroid.)

It is not uncommon for calcium imbalances to result from problems of these glands. My mother had a tumor--benign--of one of them that was discovered when her calcium serum levels--and evidence of arterial deposits--became abnormally high. She underwent surgery and is fine, though she must now take more supplemental calcium than before.

Another thing--high serum calcium levels often result when calcium is being leached or broken down from bone. There are a number of reasons for this, but often it results from tumors of the bone or blood cell producing tissues, and if calcium levels come back high, more sophisticated testing, including calcium ion levels, peripheral blood smear/cell typing, and a bone scan may be indicated.

does not lead to kidney stones of the calcium oxalate type.

It is the oxalate that is the culprit. For people with kidney stone histories,
the type of calcium recommended is calcium CITRATE.

A bacteria called Oxalobacter fomigenes normally removes oxalate
in the GI tract so it does not build up in the body: antibiotics can kill this off, leading to oxalate absorption
http://aem.asm.org/cgi/content/abstract/68/8/3841

It is thought that excess calcium may be deposited in tissues when magnesium is low, so the other posters here are correct, that a quality magnesium
product may help. But in order to remove calcium already there, you may
have to consider chelation. If you Google chelation there are tons of articles.
I'd hold off on a stent for now, given the bad press just out on those. There are new ones coming out that dissolve...those may have a better prognosis.
http://www.msnbc.msn.com/id/15405830/
It is unclear what they "do" so that they can dissolve away, at least to me.

Also have PN and IBS. Until recently, I was on Limbitrol DS (Amitriptyline/CDP) for 6 years. Amitrip is anti-cholinergic so that helps the IBS with no additional meds required. A recent second opinion by a neuroligist resulted in a recommendation for Lyrica - it's a newer drug for diabetic neuropathic pain and is also used for pain from ideopathic neuropathy. Neither drug appeals to me so a Web search turned up Ranirestat, a Japanese drug now in clinical trials in the US. Based on Phase II trials at the University of Toronto, nerve function improved. Unfortunately, it's not available yet and patients eligible for the trials must be diabetic. I've been told that there's no cure for my particular type of nerve damage except stem cell research. I can't even get the neurologists to agree on the effect of Amitrip on nerve function: does it simply mask pain or actually assists in nerve healing.

Thank you all so very much for your replies. At the moment I am taking them all in and researching your suggestions. I would like to have obtained the Calcium Bomb book mentioned by Mrs D as it seems very interesting but delivery is 4 to 6 weeks by which time I will probably have had my deep scan and know a lot more anyway!
I am also a bit concerned about your concern over stents Mrs D. So many people over here are having them and they seem to be feeling fine afterwards. Could you explain more?

Yes Brian I must drink more water, I am very remiss in that quarter.

No Glenn I am afraid I don’t know my serum calcium level. I don’t even know if this has been checked. So far I have had a chest X ray, an ECG, an Echocardiogram, and it was when I went for a Cardiac CT scan that it was discovered after just 2 breathe in and outs under the scanner that my calcium levels were so high (over1000) that they could not see through the pictures because of the white calcium reflection. I have therefore got to go and have this extra deep scan which I believe is called an electron beam angiogram (EBA). I do know that very little extra effort is required by me to set of the beginnings of an angina attack.

I take a magnesium chelate 400mg/calcium188mg supplement per day. Is this OK?

At the moment by far the worst pain and distress is caused by the pains and cramps in my feet and ankles. Nothing I do helps at all.

As I said I am continuing to go through all your suggestions including websites which have already proved most interesting. Thank you again for your kindness.

May I wish everyone here a most enjoyable holiday and a very Happy Christmas.
Also may we all suffer less in 2007.

Tony