Treatment, testing and management ideas
 

Hi all and thanks for a great forum!

I could use some ideas on further testing, treatment and management of what appears to be peripheral neuropathy in both feet and ankles.

Here's a quick history. I am now a male 43 and used to be a runner for 20 about years, until the age of 40. Not a marathon runner type, just 3 miles a few times per week. In August 2006 I did a few runs that left me in pain so I stopped for a week or so. My final run left me in pain and never subsided. My symptoms were burning, random stinging and general aching. Most symptoms got worse in the evening when the burning was the worst.

I have seen 2 Podiatrist, 1 Neurologist, and 1 Orthopedic Surgeon who specializes in feet/ankles. I have done/tried:
- 3 rounds of PT, including massage, that seems to just make things worse
- Orthotics that don't seem to help or hurt much
- Ankle Foot Orthotics (AFOs) maybe help a little
- Lyrica just made me sleepy, Amatriptaline the same and Gabapentine that helps (see below), B complex that doesn't seem to help, Capzasine Cream 3 weeks that doesn't seem to work.

For testing:
- Blood work such as B vitamin, Gout, etc. All blood work normal. I can post all if needed
- 2 sets of X-Rays of feet show nothing.
- Nerve conduction shows very mild neuropathy of left knee
- MRI of left knee shows nothing
- MRI of both feet show nothing

Over time my symptoms have lessened to a point with some weeks having worse episodes than other weeks. Now my feet tend to get cold at different times of the day. I can't seem to pin down what aggravates the neuropathy or how my episode start/stop.

I am now seeing a pain specialist who has tried me on Gabapentine 100 mg/day. At first it worked great after about 10 days but after 2 weeks wore off. They now have me increasing to 200 mg and then to 300 mg. Jury is still out on that but at least it has stopped the burning at night.

I am scheduled for a nerve block but keep rescheduling to see if the Gabapentine will take hold. That way I can pull the trigger quicker on the nerve block if need be. I have considered acupuncture but again am holding off.

I would greatly appreciate any ideas on treatment, testing and general management I would appreciate it. Forgive me if I have forgotten something, but it has been a long 3 ½ years.

Thanks again,
Dave

Hi Dave!

Welcome!:D
Sorry you have been in pain.

I am very "rusty" at this.
Fortunately, others will be along to help!:winky:

Have you had a skin punch biopsy?
This would look at small fiber nerves.

Are you gluten intolerant?
Any meds known to be neurotoxic prior to/during the onset of pain?
How is your circulation to your lower extremities?
Any discoloration when your feet feel cold?

I assure you that others here will pose better questions!:D
Great group here!

Welcome to the forum!
~DejaVu

Hi. I am on neurontin and many times a dose needs to be up to 3500 I think that what was my pain doc said for adequate pain relief. When I was increasing it was 300 at a time and now am up to 2700. I am stuck there since I hate the side effects with each increase and more so at the higher doses. Sometimes a more of combo of meds is needed too. I had a nerve block which did not help me but some it does. Did you have an mri of the brain and spine? Have you looked at the rsd board? Why I ask is cause the burning and also how you were a runner plus the unexplained pain. I have PN and RSD. It is important to find the why but sometimes for me that has not been found and I am diagnosticly tested out so the next step was pain treatment. That is where a good pain doctor who is an anestesolgist comes in. Have you see one cause who was going to preform the block? I would see one because they could give you better direction on meds and other treatment but also may give you driection on more what is going on.

Would be a good idea--
 

--if you could post those test results, so we can discuss them.

It doesn't sound like you've had very comprehensive testing for neuropathy, though; most of the testing you've had so fatrseems to have focused on mechanical problems of your lower extremities, but as has been pointed out, the cause may be higher up (spine) or even systemic and just showing up first in the nerves farthest from the center of the body--many neuropathies have this "length-dependent die back" pattern of symptoms.

As always, I recommend the Liza Jane spreadsheets as a comprehensive listing of tests for possible neurological problems, as well as a good way to track test results over time:

www.lizajane.org

Unfortunately, foot symptoms can be similar whether the damage process is located right there, higher up, or systemically--it's why the search for causes is often a long (and expensive) one of exclusion.

Wow thanks for all the responses!

No skin punch biopsy. Who generally orders those?

To my knowledge I am not gluten intolerant. No meds prior to onset - I was healthy as a horse. All docs have said my circulation looks good with good strength.

No discoloration when feet are cold, but I have a prominent red patch on tops of both feet when they get hot. No one seems to know what to think of that.

I have heard that upping the dose comes with some nasty side effects. So far I have experienced none. What are yours?

I have had not x-rays nor MRI of the lower spine. I recall there being some issue with mild scoliosis when I was a kid but mom doesn't recall that, so I hope to follow up with that. My pain doctor is the one who also will do the nerve block.

Do you think it wise to see how far gabapentin will take me before I do the nerve block?

I'd get the numbers for the B12 test, and also make sure you have a Vit D test. Many people showing up on Neurotalk's various boards are testing low in D. Some very LOW. When doctor's say "normal" don't believe them, since many lab ranges still being used are antiquated and new guidelines remain ignored. You should be at 400 at least for B12 and at 50-80ng for D.

Also were you evaluated for peripheral artery disease?
Cold extremities would be an early sign of this.

Spasms in the blood vessels may occur if you are low in magnesium. Magnesium dilates smooth muscle in the blood vessels. Try soaking in epsom salts in lukewarm water twice a day and see if this improves. If you find you like it, you can then move on to oral magnesium.

My magnesium thread, on details and how to choose a good supplement that works (magnesium OXIDE does not).
http://neurotalk.psychcentral.com/thread1138.html

Will do as soon as I can.


You are correct. Until recently, I have assumed there was a mechanical nerve entrapment, but now I am beginning to think not. It doesn't sound good, but what is "length-dependent die back"?

Thanks. These will help me keep organized.

Will post those numbers soon but recall them to be normal. Of course one doc conceded they really don't know what is normal. So I am taking B Complex 1000mg B12 per day. I don't think I was tested for Vitamin D. Is there any risk to just supplementing on that, and what levels should I take?

I have always had cold extremities even as a kid, so I have blown that off. I was beginning to think I should perhaps see a Cardiologist just to eliminate anything there.

Something odd I have noticed is random muscle spasms which have somewhat gone away from either the B complex, gabapentine. Thanks for the post I was thinking perhaps I should look into Magnesium as well.

Hi Dave,
Just a quick addendum to MrsD's note here on magnesium.
My feet ar both toasty warm this AM in a very air conditioned room!
I have recently had trouble with vasospasms in my feet and in my left hand (after a small surgery on my left arm--nerve issues).
I have noticed how warm my feet are this AM and were all night!
My left hand looks better and operates better, too!
This is after two doses of an inonic fizz magnesium. :)
I cannot say if this will be helpful to you. I did want to share this with you, however.

Again, welcome! :D
~DejaVu

Here are some Vit D suggestions:

http://neurotalk.psychcentral.com/thread92116.html

If you do not get outside and in the sun for a while each day, the general suggestion is to start at 2000IU daily.

But testing is really the way to go.

At the end of that thread, is a cardiologist's suggestion to limit calcium supplement when taking high dose D3. Since Vit D improves calcium absorption from food, I think his advice is good.
He is the first one I've seen on the net make that suggestion.
It is something to think about.

But very low Vit D is showing up frequently now, and estimates are 1/2 the US population is low. There are studies linking low D to chronic pain states, among other things.
(estimates for low magnesium are about 70% needing supplements in US)
Here is my supplement page with more info about D also:
http://neurotalk.psychcentral.com/thread121683.html

Length-dependent die-back
 

--refers to a common pattern of onset of neuropathic symptoms in which the nerves at the farthest extremities of the body experience compromise first--these are farthest from the seat of circulation/respiration, and it takes more energy to transport nutrients/oxygen to them and remove wastes from them, so if there is some sort of difficulty in overall bodily circulation, as happens in diabetes and other ischemic conditions such as the anti-nuclear antibody autoimmunities, these nerves tend to be affected first, and if the conditon is unchecked, in time nerves closer to the body center begin to be affected, so the nerves seem to be "die-ing back".

Many people first report their neuropathies present in a "stocking-glove" distribution--first the toes are affected, then the feet, then the fingertips, then the calves, then the hands. This is a result of gradual die-back due to circulatory compromise.

The side effects I had with increasing were dizzy,nausea,pressure on my head like I have a tight hat on. As for the block. Is this a sympathetic nerve block? What doctor suggested this? Is he an anesestologist? Are you increasing neurontin weekly? See my block was for my RSD. It was not mentioned for PN and I rarely hear people who have PN have it. I am not saying you should or should not. With my doctors first was meds,then blocks,then more invasive. I have read though blocks work best early in treatment. So I don't know and of course it is a personal choice.

All,

I am having trouble locating my labs, but if all else fails I have a follow-up with the Podiatrist next week and will get copies.

mrsD, thanks for the Vit D info. I am now taking 2000 IUs daily. It looks like that will be a safe value. I tried an epsom salt soak last night but it is too soon to say if it will help.

glenntaj, thanks for the explanation on Length-dependent die-back. It gives me additional impetus to find a root cause. In particular, there is a strong history of maternal diabetes, so I want to be sure this is not somehow related, even though I have had my glucose levels checked twice in the last few years.

daniella, thanks for the symptoms. I sure hope I don't get those if I have to go to such a high dose. I am now going to a pain center. My main doc is an anesthesiologist will do what I believe is a sympathetic nerve block, because she said it might 'reset the sympathetic nerve chain'. She is the doc that was please I was taking B Complex and conceded 'no one knows what is the right levels'. It is also under this doc that I am taking the gabapentin. I'd say the 100 mg/day worked for about 2-3 weeks until we upped it to 200 mg/day. Its felt like it might be working for the last few days so we will so how long this lasts. So I guess I am proceeding the same way: meds first then nerve block. Glad to know that is how someone else has proceeded. I am okay with that for now.

DejaVu, thanks for the tip on inonic fizz magnesium. Where did you get it?

I also forgot to mention I tried LED light therapy and a steroid injection back when of course they thought this might be a mechanical problem. Neither did anything.

Finally, who orders a skin punch biopsy, and who should I speak to about RSD?

More to come...

Once again, thanks for all the great information. I am saying a silent prayer that your pain will be blunted, temporarily abated or even stop soon. :hug:

Ionic fizz is at iherb.com

It is also available at some Whole foods stores for more $$

The Ionic fizz Deja Vu mentions is not really Ionic Fizz.

I posted about Ionic Fizz on my magnesium thread a while back.

Natural Calm is magnesium citrate.

This is Ionic Fizz...
http://www.iherb.com/Pure-Essence-Io...42-g/3197?at=0

I bought my first canister at Whole Foods, which was 1/2 this size for $18 or so dollars.

The magnesium in Ionic Fizz is magnesium carbonate, not citrate as in the Calm product. I find magnesium citrate very laxative for me. People react differently to magnesium products with the laxative effect. Just don't buy Magnesium Oxide, as it is useless and only tiny amounts are absorbed, the rest goes thru you. It is sold as a laxative by Phillips now.