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New to this Message Board - Searching for Answers

Posted by Nancy M. on 5/05/02 at 22:26 (082566)

Hi everyone. I'm a 50+ F. dx'd last Aug. with peripheral neuropathy in my feet. The neuro said it was 'mild' and that it was probably brought on by alcohol abuse. (Apparently alcohol destroys the B vitamins which are so important for healthy nerve tissue.) So I stopped drinking. He said I may or may not get back the feeling in my feet and toes. I told him about my right ankle being extremely painful and swollen many times, but he didn't say anything about that -- no one has. So here I am a year later and with each passing day it is becoming more and more difficult for me to walk or even stand for very long. It just is sooooo painful. I don't know if it's TTS or not. Maybe it's a broken bone in my foot? I read a little about the TTS and looked at the photos/drawings, etc. I was born with severe clubfoot and had a number of surgeries performed on my right foot when I was young -- including muscle transplant, achilles tendon lengthening, etc. I wonder if any or all of that could now be responsible for TTS...... I just don't know where to turn anymore. Thanks for listening. Nancy in PA

Re: New to this Message Board - Searching for Answers

Sharon W on 5/05/02 at 22:48 (082567)

Nancy,

I'm not a doctor and I don't know anything about surgery for clubfoot but if there was cutting around the tarsal tunnel, I imagine you could have a problem caused by scar tissue. Have you had any tests done to try to identify what your ankle problem is? I would imagine that either an MRI or a diagnostic ultrasound of the foot might be able to detect the source of the problem. There is at least one other person who has posted here who had a Dr. suggest their peripheral neuropathy (PN) might have caused them to get TTS.

I really don't know what else to say except that I know how confusing and frustrating foot pain/ankle can be, especially if you think your doctor isn't really listening when you tell him how much it hurts! Is it a neurologist that you have been seeing? What has he prescribed to control your pain? Does it seem to help with the ankle?

It sounds to me like you should ask for a second opinion; another doctor (probably a podiatrist) might come up with a different conclusion about what's going on with your foot. I don't know what tests were done to confirm that you have PN but I do know that the situation with your feet can change over time, and it sounds like you may be due for reassessment, anyway.

-- Sharon

Re: New to this Message Board - Searching for Answers

Nancy M. on 5/06/02 at 16:09 (082683)

Thanks, Sharon, for responding. It helps to know someone is listening/caring, even if it's not a doctor ;) The neuro I see dx'd PN about 9 mos. ago by using an EMG. I guess that's the most standard test. But he never did have any suggestions or prescription for the pain. (I've been seeing him for about 12 years for treatment of an unrelated neurological movement disorder -- dystonia -- for which I take clonazepam [Klonopin] and get botox injections in my neck.) He's Head of Neurology at a major Phila. hospital and specializes in movement disorders. But I guess that doesn't necessarily mean he is the best person to treat PN or to dx TTS.

I have an appointment tomorrow a.m. with my primary care physician who, hopefully, will refer me to an orthopaedic specialist. Also, do you think it makes much difference whether I see an orthopaedic specialist rather than a podiatrist?

Re: New to this Message Board - Searching for Answers

Sharon W on 5/06/02 at 16:26 (082685)

Nancy,

Neurologists can diagnose TTS, but the test usually used for that purpose is nerve conduction velocity studies, not the EMG. I find it hard to believe he hasn't done NCV studies. Did he even examine your ankle and check for Tinel's sign? If not, you can easily do that, yourself. Just go to this site; it explains how to check for it at home:

http://www.efn.org/~opal/paintest.html

That link is part of Steve's website on tarsal tunnel, which in turn has connections to various articles, etc. on TTS. Here's Steve's website:

http://www.efn.org/~opal/tarsal1.html

Check it out sometime!

Actually, I would think a podiatrist would probably be the best place to start, but I don't know what is available to you where you live. Podiatrists do SPECIALIZE in feet, and they treat TTS all the time. Of course, an ortho is probably the best person to tell you whether you have a problem with your back, hip, knee, etc. that could be CONTRIBUITING to your foot and ankle pain.

I hope that helps.

-- Sharon

Re: New to this Message Board - Searching for Answers

Dennis B. on 5/06/02 at 16:53 (082688)

Suggest that you try the following websites: http://www.neuropathy.org and also http://www.braintalk.org . Peripheral Neuropathy CAN BE a whole different ball game than TTS. I personally suffer from TTS, Spinal Stenosis and Peripheral Neuropathy. My PN is caused by Vasculitis. My initial diagnosis was TTS with some or 'mild' PN, the Pn took over and I am in a regressing condition and as of late ALS is also suspected. Do not ignore either the TTS or the PN, get aggresive with your Doc and find out what is going on, it's your body and your life. PN is a curious condition as is TTS and unfortunately there are not a lot of physicians that are familiar with either condition, however, it seems as though more and more are getting familiarized with both, good for all of us. Good luck to you, if yuou wish to e-mail me directly, please advise so and I will give you my e-mail address. DENNIS.

Re: Peripheral Neuropathy pain meds

Sharon W on 5/06/02 at 18:10 (082700)

Nancy,

I don't have peripheral neuropathy but I do have two excellent books about PN by John A. Senneff that you should keep an eye out for if you don't already have them: Numb Toes and Aching Soles, and Numb Toes and Other Woes.I found them at my local Barnes & Noble Bookstore. These books will pretty much answer any general questions you may have about this condition. Of course, your own Dr. is the one to answer questions about your own particular case of PN and to provide you with prescriptions that will help with your pain. (And if your current neurologist won't do that for you, perhaps it's time to find another one that will!)

According to Senneff, three medications that are typically prescribed as treatment for peripheral neuropathy are Ultram (trazadone -- a pain medicine), Neurontin (gabapentin - originally developed to treat seizures but now commonly prescribed for patients with chronic nerve pain), and Elavil (amitriptyline - a tricyclic antidepressant that has been shown to relieve chronic nerve pain.)

Sometimes doctors don't prescribe medications for pan until you ASK for them. I don't like that' I feel that treating the pain produced by a patient's condition is part of treating that condition, and appropriate pain meds should be prescribed routinely. But they often aren't. Perhaps if you ASK your neurologist about these three medications, by name, he will prescribe one or more of them for you.

Good luck!

-- Sharon

Re: New to this Message Board - Searching for Answers

Ed Davis, DPM on 5/06/02 at 18:29 (082708)

I would definitely have nerve conduction velocity tests to better define the condition.
Ed

Re: New to this Message Board - Searching for Answers

Lara T on 5/07/02 at 05:44 (082759)

My experience is it depends on the doctor more than the discipline.

I've seen 3 podiatrists and 3 orthopedic surgeons, as well as a general practitioner, physical therapist & chiropractor (who I see for other stuff but I've heard they have been helpful with some feet injuries - Kim Batten took her chiro to Sydney Olympics, allowing her to participate rather than retire).

The general practitioner reasonably referred me on, the P.T. didn't help much but not his fault, same with the chiropractor.

I don't think one (orthopod or podiatrist) is necessarily better than the other. Of the six orthopods or podiatrists I hvae seen, two have been helpful - one a podiatrist and one an orthopod. The podiatrist that was helpful sees a lot of sports injuries (lots of week-end athletes as well as at least one Olympian) which I think is helpful. My impression from waht the other podiatrists said and did is that they are far more familiar with diabetes and aging problems. The podiatrist tried compression socks - which were very helpful for me (don't work for a lot of people but is easy and non-invasive to try). One of the orthopods scoffed at podiatrists who rely on compression socks, and another of the orthopods filed in for her bag of tricks in the future - she'd never heard of it before but if it worked she wouldn't recommend surgey. So when it came to treatment the sports podiatrist was the most helpful. Don't know what the 'good' orthopod would have done if I had gotten to her first, but recommended against surgery if socks were working and I lacked certain signs that she thought increased the likelihood that surgery would be successful.

Two of the doctors told me various things were in my head (one orthopod and one podiatrist) and one orthopod gave me a medically impossible explanation.

So my experience is it depends on the doctor more than the discipline.

Re: PS

Sharon W on 5/07/02 at 07:49 (082765)

Nancy,

I noticed Dr. Ed's post (below) -- proof that there is at least one Dr. who listens and cares! (I don't suppose you're in Washington State, though, are you?)

-- Sharon

Re: Gout?

BrianG on 5/07/02 at 20:37 (082916)

Hi Nancy,

Just throwing something out here, have you been tested for gout? Your symptoms sounded like my grandfather, who also drank alcohol. Good luck on the diagnosis, then you can begin treating it properly.

BrianG

Re: New to this Message Board - Searching for Answers

Sharon W on 5/05/02 at 22:48 (082567)

Nancy,

I'm not a doctor and I don't know anything about surgery for clubfoot but if there was cutting around the tarsal tunnel, I imagine you could have a problem caused by scar tissue. Have you had any tests done to try to identify what your ankle problem is? I would imagine that either an MRI or a diagnostic ultrasound of the foot might be able to detect the source of the problem. There is at least one other person who has posted here who had a Dr. suggest their peripheral neuropathy (PN) might have caused them to get TTS.

I really don't know what else to say except that I know how confusing and frustrating foot pain/ankle can be, especially if you think your doctor isn't really listening when you tell him how much it hurts! Is it a neurologist that you have been seeing? What has he prescribed to control your pain? Does it seem to help with the ankle?

It sounds to me like you should ask for a second opinion; another doctor (probably a podiatrist) might come up with a different conclusion about what's going on with your foot. I don't know what tests were done to confirm that you have PN but I do know that the situation with your feet can change over time, and it sounds like you may be due for reassessment, anyway.

-- Sharon

Re: New to this Message Board - Searching for Answers

Nancy M. on 5/06/02 at 16:09 (082683)

Thanks, Sharon, for responding. It helps to know someone is listening/caring, even if it's not a doctor ;) The neuro I see dx'd PN about 9 mos. ago by using an EMG. I guess that's the most standard test. But he never did have any suggestions or prescription for the pain. (I've been seeing him for about 12 years for treatment of an unrelated neurological movement disorder -- dystonia -- for which I take clonazepam [Klonopin] and get botox injections in my neck.) He's Head of Neurology at a major Phila. hospital and specializes in movement disorders. But I guess that doesn't necessarily mean he is the best person to treat PN or to dx TTS.

I have an appointment tomorrow a.m. with my primary care physician who, hopefully, will refer me to an orthopaedic specialist. Also, do you think it makes much difference whether I see an orthopaedic specialist rather than a podiatrist?

Re: New to this Message Board - Searching for Answers

Sharon W on 5/06/02 at 16:26 (082685)

Nancy,

Neurologists can diagnose TTS, but the test usually used for that purpose is nerve conduction velocity studies, not the EMG. I find it hard to believe he hasn't done NCV studies. Did he even examine your ankle and check for Tinel's sign? If not, you can easily do that, yourself. Just go to this site; it explains how to check for it at home:

http://www.efn.org/~opal/paintest.html

That link is part of Steve's website on tarsal tunnel, which in turn has connections to various articles, etc. on TTS. Here's Steve's website:

http://www.efn.org/~opal/tarsal1.html

Check it out sometime!

Actually, I would think a podiatrist would probably be the best place to start, but I don't know what is available to you where you live. Podiatrists do SPECIALIZE in feet, and they treat TTS all the time. Of course, an ortho is probably the best person to tell you whether you have a problem with your back, hip, knee, etc. that could be CONTRIBUITING to your foot and ankle pain.

I hope that helps.

-- Sharon

Re: New to this Message Board - Searching for Answers

Dennis B. on 5/06/02 at 16:53 (082688)

Suggest that you try the following websites: http://www.neuropathy.org and also http://www.braintalk.org . Peripheral Neuropathy CAN BE a whole different ball game than TTS. I personally suffer from TTS, Spinal Stenosis and Peripheral Neuropathy. My PN is caused by Vasculitis. My initial diagnosis was TTS with some or 'mild' PN, the Pn took over and I am in a regressing condition and as of late ALS is also suspected. Do not ignore either the TTS or the PN, get aggresive with your Doc and find out what is going on, it's your body and your life. PN is a curious condition as is TTS and unfortunately there are not a lot of physicians that are familiar with either condition, however, it seems as though more and more are getting familiarized with both, good for all of us. Good luck to you, if yuou wish to e-mail me directly, please advise so and I will give you my e-mail address. DENNIS.

Re: Peripheral Neuropathy pain meds

Sharon W on 5/06/02 at 18:10 (082700)

Nancy,

I don't have peripheral neuropathy but I do have two excellent books about PN by John A. Senneff that you should keep an eye out for if you don't already have them: Numb Toes and Aching Soles, and Numb Toes and Other Woes.I found them at my local Barnes & Noble Bookstore. These books will pretty much answer any general questions you may have about this condition. Of course, your own Dr. is the one to answer questions about your own particular case of PN and to provide you with prescriptions that will help with your pain. (And if your current neurologist won't do that for you, perhaps it's time to find another one that will!)

According to Senneff, three medications that are typically prescribed as treatment for peripheral neuropathy are Ultram (trazadone -- a pain medicine), Neurontin (gabapentin - originally developed to treat seizures but now commonly prescribed for patients with chronic nerve pain), and Elavil (amitriptyline - a tricyclic antidepressant that has been shown to relieve chronic nerve pain.)

Sometimes doctors don't prescribe medications for pan until you ASK for them. I don't like that' I feel that treating the pain produced by a patient's condition is part of treating that condition, and appropriate pain meds should be prescribed routinely. But they often aren't. Perhaps if you ASK your neurologist about these three medications, by name, he will prescribe one or more of them for you.

Good luck!

-- Sharon

Re: New to this Message Board - Searching for Answers

Ed Davis, DPM on 5/06/02 at 18:29 (082708)

I would definitely have nerve conduction velocity tests to better define the condition.
Ed

Re: New to this Message Board - Searching for Answers

Lara T on 5/07/02 at 05:44 (082759)

My experience is it depends on the doctor more than the discipline.

I've seen 3 podiatrists and 3 orthopedic surgeons, as well as a general practitioner, physical therapist & chiropractor (who I see for other stuff but I've heard they have been helpful with some feet injuries - Kim Batten took her chiro to Sydney Olympics, allowing her to participate rather than retire).

The general practitioner reasonably referred me on, the P.T. didn't help much but not his fault, same with the chiropractor.

I don't think one (orthopod or podiatrist) is necessarily better than the other. Of the six orthopods or podiatrists I hvae seen, two have been helpful - one a podiatrist and one an orthopod. The podiatrist that was helpful sees a lot of sports injuries (lots of week-end athletes as well as at least one Olympian) which I think is helpful. My impression from waht the other podiatrists said and did is that they are far more familiar with diabetes and aging problems. The podiatrist tried compression socks - which were very helpful for me (don't work for a lot of people but is easy and non-invasive to try). One of the orthopods scoffed at podiatrists who rely on compression socks, and another of the orthopods filed in for her bag of tricks in the future - she'd never heard of it before but if it worked she wouldn't recommend surgey. So when it came to treatment the sports podiatrist was the most helpful. Don't know what the 'good' orthopod would have done if I had gotten to her first, but recommended against surgery if socks were working and I lacked certain signs that she thought increased the likelihood that surgery would be successful.

Two of the doctors told me various things were in my head (one orthopod and one podiatrist) and one orthopod gave me a medically impossible explanation.

So my experience is it depends on the doctor more than the discipline.

Re: PS

Sharon W on 5/07/02 at 07:49 (082765)

Nancy,

I noticed Dr. Ed's post (below) -- proof that there is at least one Dr. who listens and cares! (I don't suppose you're in Washington State, though, are you?)

-- Sharon

Re: Gout?

BrianG on 5/07/02 at 20:37 (082916)

Hi Nancy,

Just throwing something out here, have you been tested for gout? Your symptoms sounded like my grandfather, who also drank alcohol. Good luck on the diagnosis, then you can begin treating it properly.

BrianG