[dac122]

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

[DejaVu]

Hi Dave!

Welcome!
Sorry you have been in pain.

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

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!
Great group here!

Welcome to the forum!
~DejaVu

[daniella]

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.

[glenntaj]

--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.

[dac122]

Originally Posted by DejaVu

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?

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.

[dac122]

Originally Posted by daniella

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.

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?

[mrsD]

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

[dac122]

Originally Posted by glenntaj

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

Will do as soon as I can.

Originally Posted by glenntaj

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.

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"?

Originally Posted by glenntaj

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:

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.

Thanks. These will help me keep organized.

[dac122]

Originally Posted by mrsD

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.

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?

Originally Posted by mrsD

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

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.

Originally Posted by mrsD

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).

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.

[DejaVu]

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!
~DejaVu