Neurology Forum
This expert forum is not accepting new questions. Please post your question in one of our medical support communities.
Avatar universal

Peripheral Neuropathy?

Started with numbness and pain in left foot toe area.  Felt like there was a wedge between big toe and toe next to it.  After 4 months, many doctors (GP, podiatrist, vascular, pain clinic, ortho, went for EMG but could not tolerate after 4th needle.  Left with excruciating pain and numbness half way up my leg.   Dr. that did EMG lost results and report had erroneous information.  Was first told I have compressed nerve(s) in foot, then ortho did nerve block which increased pain.  Was sent to neurologist.  His diagnosis - peripheral neuropathy.  Started on neurontin 100 mg./day, now increased to 200 mg./day.  Some mild, minor side effects but absolutely no pain relief.  

How can I be sure PN diagnosis is correct?  How much neurontin will I have to take to relieve pain?  Will I be taking neurontin for the rest of my life?  What long term effects will there be from neurontin?   Is there anything else I can or should take instead of the neurontin?

Can anyone help?
22 Responses
Avatar universal
When you say peripheral neuropathy, I'm assuming you mean a generalized polyneuropathy which is generally numbness/tingling/pain starting in the legs and typically symmetric or at least involving both legs.  If so, then the nerve conduction portion (shock part) of the EMG may be able to further characterize the problem or rule it out. If it was negative, then more specialized testing to look for a small fiber neuropathy may be done in an autonomic lab.

If however, it looks more like there's something going on in only one leg and it's progressive, then the needle exam from the EMG and possibly an MRI of the lower back would be important to help localize the problem. Unfortunately, it looks like you may need another EMG as the previous study was suboptimal and is actually now lost.  Consider a major academic center where there are neurologists who have specialized in EMG/neuromuscular disorders.  If the pain is unbearable, talk to your PCP and see if you can get some Xanax or something to calm you down prior to the test so that you can tolerate it better.

As for pain, we usually go up to about 2-3gm of the neurontin (200mg is a baby dose) before we give up on it.  It's a pretty safe drug that doesn't appear to have any serious long term effects.  The biggest complaints that we get are sedation.  Until this problem is figured out, it's difficult to say what the best method of treatment would be.  But elavil is also something that may help with nerve pain.  Best of luck.
Avatar universal
It is not surprising that you have no pain relief from such a tiny dose of neurontin. I have taken that drug, and these are a few things my neurologist told me:

* Most people begin to feel some pain relief at a dose of 1,500-1,800 mg
* The usual way to start taking neurontin is to start at 900 mg (one 300-mg tablet 3 times a day), then add 300 mg (one tablet) about every 1-2 weeks
* You can take up to 3,600 mg a day without worrying too much that it's getting to be a lot for your system to handle
* There may be a side effects like dizziness, sleepiness, and mental "flakiness"-- you will have to balance these for yourself against how much pain relief you are getting (ie, you choose when to stop ramping the drug up)
* You should taper the drug off slowly just like you ramped it up slowly

So I'm surprised your doctor would put you on such a small dose-- it can't possibly have much effect! Neurontin is a great drug because it isn't processed in the liver. (You just pee it out in the same form as it entered). That means no dependence and no accumulation in your body. It's a very safe choice for pain relief, so it's a good way to start.
Avatar universal
Thank you for your replies.  My problem is with my left foot, primarily in the area of the big toe and the toe next to it.  There is no problem in any other area of my body.  The pain and numbness are confined to my left foot.  The sensations run the gamut of dull, sharp, burning, tingling, and every other word I've ever heard to describe pain.

After the NCV portion of the EMG, the Dr. told me I had 2 damaged nerves.  I am 51 years old and have a history of phlebitis for 31 years of those 51.  At one point, the podiatrist theorized there might be a varicosed vein pressing on a nerve.  

The neurologist I saw did the exam with the tuning fork and a wheel-like device to test sensations on both feet.  At the point where I could not feel the vibration on my foot, he placed the tuning fork on my hand (on both sides) and announced I had diminished sensations in both feet.

The EMG experience I had was horrific.  I had excruciating pain for 5 full days afterwards and won't consider going through that again under any circumstance.  

As for the neurontin.  I was on 100mg for a week, then 200mg for 4 days and now on 300mg 8 days until my next appointment with the neurologist.  At this rate, it sounds like it'll be a very very long time before I get any pain relief at all.

Avatar universal
I have also been diagnosed with peripheral axial sensory neuropathy.  I haven't had much pain but have been experiencing tingling, numbness, etc starting in my feet and progressing upward.  It is now just above my knees and going higher.  I have the same symptoms in my hands but it has not progressed up my arms so far.  I was glad to hear about the lack of long term effects of neurontin use as I started on 100 mg per day, added 100 per day on the first of each month and am now up to 700 per day going to 800 per day on April 1 and then on to ???  If anyone has more experience with the long term effects of neurontin or the neuropathy itself, please let us know.
Avatar universal
Hi!  How long ago were you diagnosed with peripheral neuropathy?  Can you tell me what tests were done to reach this diagnosis?  I have been experiencing tingling in both feet and legs which has progressed to some burning and sensations of numbness, varying in intensity throughout the day.  I've had MRIs and bloodwork, ruled out MS, Lupus, RA, etc..  When I asked the doc on this forum, he suggested that it might be a PN.  I see my neuro on Monday and am going to ask for more tests, so I was just curious about your case since it sounds similar.  

Thanks, Colleen
Avatar universal
I have also been diagnosed with peripheral neuropathy. I first complained about my right big toe and my PCP immediately diagnosed my symptom as GOUT. When continuing to complain I went from Colchicine, and Indomethacin SR, to Allopurinol.
No-longer complaining of my right toe but now both feet and symptom felt slightly different, a lot of burning. My burning progressed now no longer restricted to my joint in my toe, but was radiating through out both feet (more intense in my left foot). This developed over six months. When I mentioned to the PCP that my feet felt raw (much like shingles) I was sent to a Neurologist. After three EMG
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease