Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

Two of us at my senior residence use Gabapentin. Another uses Lyrica. I take 300 Gabapentin mg twice daily.

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@caf132

I have neuropathy in my feet and fingers. It is a side effect of the Taxol chemotherapy I finished in October. No improvement after 3 months.

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I have no other health conditions that have contributed to neuropathy. It started at the very end of my chemotherapy. Never had it before. I am very active and work outside and have never had a problem before. It is defiantly caused by the chemotherapy. My doc says it can take up to a year if its going to go away.

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My diagnosis is Axonal Neuropathy. How does it affect you differently than Peripheral Neuropathy?

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@ridgerunner

My diagnosis is Axonal Neuropathy. How does it affect you differently than Peripheral Neuropathy?

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Hello @ridgerunner, I found some information on the Neuromusclar Disease Center at Washington University, St. Louis, MO. on axonal neuropathy and treatments – http://neuromuscular.wustl.edu/antibody/pnimax.html. I think it’s more related to motor sensory nerves but I have no medical knowledge on the differences. Hopefully others will have an answer for you.

John

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Thank you for your reply. It will take a bit to digest all that information. I was given a diagnosis of axonal neuropathy but no information on cause, care, or a prognosis. I have had tingling/numb toes/feet for about 5 years. Have begun to have balance problems and sometimes not able to feel the gas peddle in my car. I’ve had hypoglycemia for about 50 years (I am 73). Thank you again for your reply.

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Hello @ridgerunner, I think we may be two peas in a pod with slightly different diagnosis. I’m also 73 and have had the tingling, numb toes & feet for over 20 years but ignored until this past March when I went to a Mayo neurologist and was diagnosed with idiopathic small fiber neuropathy. The neurologist thought it may be genetic but my living relatives are too far away to run tests. There can be many causes for neuropathy including chemotherapy and some drugs. I believe lisonpril (blood pressure med) was the cause of my SFPN. I took it for over 5 years in my 40s until I participated in a Mayo heart study and the cause/diagnosis of my high blood pressure was changed and I was switched to spironolactone and hydrachlorathyazide. It could also have been caused by me being pre-diabetic but I’m not fully convinced.

If you do not have the pain that goes with neuropathy you are one of the 20% or so that only has the numbness/tingling and not the pain that goes with it. I did not start being proactive until last March which is when I had an EMG and several MRIs before meeting with the Mayo neurologist. At that time I was still looking for the magic bullet and trying to avoid all the scams out there for people with our condition. After my neurologist told me there are no medications or topical creams/oils that will get rid of numbness I started doing my own research. First I joined the Minnnesota Neuropathy Association where I started my search. They had some resources on the website for things that have worked for some people with the caveat not everyone will be helped with each of the treatments so you just have to keep looking until you find something that works for you. There is also quite a bit of information on the Foundation for Peripheral Neuropathy’s website. I have similar problems with balance and driving. There are some exercises that will help with your balance. I will see if I can find the link and post it.

After the neurologist told me there was no magic bullet for the numbness/tingling I decided to step up my search and found several closed Facebook groups on neuropathy. I had joined a couple of them before finding one that works for me because they offer a solution where the other groups were more for support and sharing stories/diagnosis. This group https://www.facebook.com/groups/SPNPD/ – Solutions for Peripheral Neuropathy Pain & Discomfort has put together a protocol of supplements that will help with repairing the nerves. It may not work for everyone but they have a very high number of success stories and over 3000 members in the group, all with different PN and multiple other diagnosis. The group sells nothing and has recently obtained their 501c3 status which is a plus for me. I started taking the protocol in the first week in September 2016 and when I started the numbness/tingling was in both legs down through the toes starting just below the knees. It is now just above the ankles so even if it doesn’t total repair the nerves down through the toes I’m happy because it has reverse the progress of the disease. I also have polymyalgia rheumatica and it has been in remission for about 6 or 7 years but it came back this past August so I had to start taking prednisone for it. I’m currently trying to titrate off of the medication but it’s not going well so will just have to keep working on it.

I would recommend taking a look at the protocol and then discussing it with your neurologist or primary care physician.

Good luck and don’t give up, there is hope!

John

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@ridgerunner

Thank you for your reply. It will take a bit to digest all that information. I was given a diagnosis of axonal neuropathy but no information on cause, care, or a prognosis. I have had tingling/numb toes/feet for about 5 years. Have begun to have balance problems and sometimes not able to feel the gas peddle in my car. I’ve had hypoglycemia for about 50 years (I am 73). Thank you again for your reply.

Jump to this post

You should be under the care of a neurologist. Balance problems will lead to a fall.Many people take Gabapentin or Lyrica.

What do you do for your hypoglycemia? I am diabetic and I think your situation is worse.

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@johnbishop

Hello @ridgerunner, I think we may be two peas in a pod with slightly different diagnosis. I’m also 73 and have had the tingling, numb toes & feet for over 20 years but ignored until this past March when I went to a Mayo neurologist and was diagnosed with idiopathic small fiber neuropathy. The neurologist thought it may be genetic but my living relatives are too far away to run tests. There can be many causes for neuropathy including chemotherapy and some drugs. I believe lisonpril (blood pressure med) was the cause of my SFPN. I took it for over 5 years in my 40s until I participated in a Mayo heart study and the cause/diagnosis of my high blood pressure was changed and I was switched to spironolactone and hydrachlorathyazide. It could also have been caused by me being pre-diabetic but I’m not fully convinced.

If you do not have the pain that goes with neuropathy you are one of the 20% or so that only has the numbness/tingling and not the pain that goes with it. I did not start being proactive until last March which is when I had an EMG and several MRIs before meeting with the Mayo neurologist. At that time I was still looking for the magic bullet and trying to avoid all the scams out there for people with our condition. After my neurologist told me there are no medications or topical creams/oils that will get rid of numbness I started doing my own research. First I joined the Minnnesota Neuropathy Association where I started my search. They had some resources on the website for things that have worked for some people with the caveat not everyone will be helped with each of the treatments so you just have to keep looking until you find something that works for you. There is also quite a bit of information on the Foundation for Peripheral Neuropathy’s website. I have similar problems with balance and driving. There are some exercises that will help with your balance. I will see if I can find the link and post it.

After the neurologist told me there was no magic bullet for the numbness/tingling I decided to step up my search and found several closed Facebook groups on neuropathy. I had joined a couple of them before finding one that works for me because they offer a solution where the other groups were more for support and sharing stories/diagnosis. This group https://www.facebook.com/groups/SPNPD/ – Solutions for Peripheral Neuropathy Pain & Discomfort has put together a protocol of supplements that will help with repairing the nerves. It may not work for everyone but they have a very high number of success stories and over 3000 members in the group, all with different PN and multiple other diagnosis. The group sells nothing and has recently obtained their 501c3 status which is a plus for me. I started taking the protocol in the first week in September 2016 and when I started the numbness/tingling was in both legs down through the toes starting just below the knees. It is now just above the ankles so even if it doesn’t total repair the nerves down through the toes I’m happy because it has reverse the progress of the disease. I also have polymyalgia rheumatica and it has been in remission for about 6 or 7 years but it came back this past August so I had to start taking prednisone for it. I’m currently trying to titrate off of the medication but it’s not going well so will just have to keep working on it.

I would recommend taking a look at the protocol and then discussing it with your neurologist or primary care physician.

Good luck and don’t give up, there is hope!

John

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John,

I’ve been reading your posts for the past few months and you’re very knowledgeable about peripheral neuropathy. You also have a lot of good suggestions. As you may recall from an earlier post of mine, I’ve been dealing with tingling in my feet and legs since 1994. I was diagnosed in 2014 with idiopathic peripheral neuropathy by a neurologist in Minneapolis. I had had a nerve conduction study done and it showed that I had absent reflexes in both legs. I don’t remember which reflexes were absent. I told my neurologist that I thought I had small fiber sensory neuropathy (SFSN) and because of those absent reflexes, he said I didn’t. Since that time, I participated in a study at the University of Minnesota and was examined again by another neurologist who looked at my EMG results and said I didn’t have PN! He thought I had SFSN. I pointed out to him the absent reflexes, and he said my first neurologist had to find something “abnormal” in my results in order to get paid by the insurance company! Thoughts?

Anyhow, I’m now taking 1200mg of gabapentin, and it seems to help. It also does wonder for my back pain! I tried being weaned off of the gabapentin a few months because I didn’t think it was helping, but, surprisingly, it is helping quite a bit.

I appreciate any comments.

REPLY
@ridgerunner

Thank you for your reply. It will take a bit to digest all that information. I was given a diagnosis of axonal neuropathy but no information on cause, care, or a prognosis. I have had tingling/numb toes/feet for about 5 years. Have begun to have balance problems and sometimes not able to feel the gas peddle in my car. I’ve had hypoglycemia for about 50 years (I am 73). Thank you again for your reply.

Jump to this post

I have seen neurologist. First one said my tingling and numb toes and feet was a result of a high school basketball injury to my back (I am 73). Second doctor I saw performed a test on my feet/legs, printed out something and told me to give it to my regular doctor. I gave it to my regular doctor and he sent me back for more testing to see what was causing it. The second visit he performed tests on my hands and with no discussion gave me another letter to take to my regular doctor. I did know enough to ask what kind of neuropathy and he did tell me what it was. End of visit. My A1C is 8 and my regular doctor says the neuropathy is not caused by diabetes. (My brother had neuropathy so I am thinking it is inherited). I have no pain in my feet or hands so am not on medication for that. I watch my diet for the hypoglycemia. I have ICS as well so I am really watching what I eat–which is difficult, as it is for everyone. I am so fatigued. nauseous and dizzy at times that I have to sit down while fixing my food, showering, etc. I am also sleepy quite a bit. My doctor gave me Nuvigil I only take that when I have to be out during the day. I feel something else is wrong making me nauseous, weak, dizzy and sleepy but would like to find out if that is possibly side effects of neuropathy. Not pleased with my medical care at all–which is why I am on my computer trying to grasp all the information I can so I can go forward.

REPLY
@johnbishop

Hello @ridgerunner, I think we may be two peas in a pod with slightly different diagnosis. I’m also 73 and have had the tingling, numb toes & feet for over 20 years but ignored until this past March when I went to a Mayo neurologist and was diagnosed with idiopathic small fiber neuropathy. The neurologist thought it may be genetic but my living relatives are too far away to run tests. There can be many causes for neuropathy including chemotherapy and some drugs. I believe lisonpril (blood pressure med) was the cause of my SFPN. I took it for over 5 years in my 40s until I participated in a Mayo heart study and the cause/diagnosis of my high blood pressure was changed and I was switched to spironolactone and hydrachlorathyazide. It could also have been caused by me being pre-diabetic but I’m not fully convinced.

If you do not have the pain that goes with neuropathy you are one of the 20% or so that only has the numbness/tingling and not the pain that goes with it. I did not start being proactive until last March which is when I had an EMG and several MRIs before meeting with the Mayo neurologist. At that time I was still looking for the magic bullet and trying to avoid all the scams out there for people with our condition. After my neurologist told me there are no medications or topical creams/oils that will get rid of numbness I started doing my own research. First I joined the Minnnesota Neuropathy Association where I started my search. They had some resources on the website for things that have worked for some people with the caveat not everyone will be helped with each of the treatments so you just have to keep looking until you find something that works for you. There is also quite a bit of information on the Foundation for Peripheral Neuropathy’s website. I have similar problems with balance and driving. There are some exercises that will help with your balance. I will see if I can find the link and post it.

After the neurologist told me there was no magic bullet for the numbness/tingling I decided to step up my search and found several closed Facebook groups on neuropathy. I had joined a couple of them before finding one that works for me because they offer a solution where the other groups were more for support and sharing stories/diagnosis. This group https://www.facebook.com/groups/SPNPD/ – Solutions for Peripheral Neuropathy Pain & Discomfort has put together a protocol of supplements that will help with repairing the nerves. It may not work for everyone but they have a very high number of success stories and over 3000 members in the group, all with different PN and multiple other diagnosis. The group sells nothing and has recently obtained their 501c3 status which is a plus for me. I started taking the protocol in the first week in September 2016 and when I started the numbness/tingling was in both legs down through the toes starting just below the knees. It is now just above the ankles so even if it doesn’t total repair the nerves down through the toes I’m happy because it has reverse the progress of the disease. I also have polymyalgia rheumatica and it has been in remission for about 6 or 7 years but it came back this past August so I had to start taking prednisone for it. I’m currently trying to titrate off of the medication but it’s not going well so will just have to keep working on it.

I would recommend taking a look at the protocol and then discussing it with your neurologist or primary care physician.

Good luck and don’t give up, there is hope!

John

Jump to this post

Hi Margaret (@magg),

Thank you for the kind words (not sure I deserve them though). I think it was a good thing to get a second opinion. The more questions you can ask your doctor will help you gain knowledge. The doctor patient relationship has to be one of trust and confidence. We patients can help by not being afraid to ask questions we may be thinking and to be our own advocate. Doctors (my opinion only) have to see x number of patients and realistically can’t be your advocate. They listen to how you describe your symptoms, have tests done, and use their expertise and judgement to give you a diagnosis. During my exam by my Mayo neurologist he did a good job of explaining the nervous system, told me what to expect, etc. He even took photos with his cell phone of my feet because he wanted to use them in a training seminar of what the typical feet of someone who has peripheral neuropathy look like (due to my hammer toes). It did make me laugh so I told him to go for it. I’m sure the second neurologist may be correct about the coding so it would be covered (and he would be paid) by insurance. I have had similar questions when trying to get my doctor to run extra labs. She told me they may not be covered by insurance and did I still want to have the tests done. I thanked her for asking me and told her to go ahead and run the tests which I needed to have to confirm results of supplements I am taking. I called the insurance company and they said as long as the doctor codes the charges to what you have/being treated for it would be covered by the insurance.

Here is some information on Johns Hopkins website on SFSN: http://bit.ly/2jYCuWw

Here is one of the best (and easy to understand) explanations of SFPN:

My primary care doctor gave me a script for gabapentin which I took for about a month with no results. When I told her it wasn’t helping with my numbness she brought in another doctor on the PCP team and he asked more questions about my symptoms. After I told him I only have the numbness and tingling with my neuropathy, he said gabapentin doesn’t do anything for numbness. It only helps block the pain. I’m am not a doctor and have zero medical training but I have learned that knowledge is power and will help you make decisions and be your own advocate. Gabapentin was originally designed for antiepileptic therapy but is used in treating neuropathy associated pain. If you do a Google search on gabapentin side effects it will give you some idea of why I would be concerned.

Mayo Clinic information on gabapentin – http://mayocl.in/2iFvk7C

I believe that gabapentin, lyrica and the other drugs used to treat pain associated with PN do actually help with the pain but at what costs. The drugs do not address what is causing the pain (damaged nerves), they only mask or block the brain from receiving the pain signals. The fix is to repair the nerves but to my knowledge there is not a lot of research going into repairing damaged nerves. I did recently hear of study of from 2012 about Deer antler innervation and regeneration – https://www.ncbi.nlm.nih.gov/pubmed/22201810. I’m hoping that more research focuses on this aspect of neuropathy.

I know what seems to be working for me to reduce the numbness from just below the knees in both legs to just above the ankles. It may not work for you but if it enables you to titrate off of the pain medications I think it’s worth a try. As always, when you take supplements you should discuss them with your doctor/neurologist first. I did this and also had my daughter who used to be a medical secretary in neurology at Mayo run it by her top neurologist. She basically poo pooed the idea that supplements can help but the key point here is that she had no drugs that will help either. By help I mean fix or repair damaged nerves. If I had the pain, yes I would probably want the pain killers even as much as I hate taking any medications. But if there was an alternative and it would work – and it’s not going to hurt me, I would jump at the chance and I did.

This is what helped me –
https://www.facebook.com/groups/SPNPD/

I would take a look at it, read through all the new member welcome information, and discuss it with your doctor/neurologist.

I apologize for being so wordy. I hope that you continue to ask questions, do your own research so that you are able to ask even better questions when you discuss your diagnosis with your doctor and most important be your own advocate. Please keep us informed on any progress you make.

John

REPLY
@ridgerunner

Thank you for your reply. It will take a bit to digest all that information. I was given a diagnosis of axonal neuropathy but no information on cause, care, or a prognosis. I have had tingling/numb toes/feet for about 5 years. Have begun to have balance problems and sometimes not able to feel the gas peddle in my car. I’ve had hypoglycemia for about 50 years (I am 73). Thank you again for your reply.

Jump to this post

Have you had any recent labs done? Just curious curious as I am having my doctor add B panel labs to make sure some of the supplements I take are not causing any issues. I was concerned most about B6 toxicity (http://lpi.oregonstate.edu/mic/vitamins/vitamin-B6#toxicity) as I know it can really mess with your body.

John

REPLY
@johnbishop

Hello @ridgerunner, I think we may be two peas in a pod with slightly different diagnosis. I’m also 73 and have had the tingling, numb toes & feet for over 20 years but ignored until this past March when I went to a Mayo neurologist and was diagnosed with idiopathic small fiber neuropathy. The neurologist thought it may be genetic but my living relatives are too far away to run tests. There can be many causes for neuropathy including chemotherapy and some drugs. I believe lisonpril (blood pressure med) was the cause of my SFPN. I took it for over 5 years in my 40s until I participated in a Mayo heart study and the cause/diagnosis of my high blood pressure was changed and I was switched to spironolactone and hydrachlorathyazide. It could also have been caused by me being pre-diabetic but I’m not fully convinced.

If you do not have the pain that goes with neuropathy you are one of the 20% or so that only has the numbness/tingling and not the pain that goes with it. I did not start being proactive until last March which is when I had an EMG and several MRIs before meeting with the Mayo neurologist. At that time I was still looking for the magic bullet and trying to avoid all the scams out there for people with our condition. After my neurologist told me there are no medications or topical creams/oils that will get rid of numbness I started doing my own research. First I joined the Minnnesota Neuropathy Association where I started my search. They had some resources on the website for things that have worked for some people with the caveat not everyone will be helped with each of the treatments so you just have to keep looking until you find something that works for you. There is also quite a bit of information on the Foundation for Peripheral Neuropathy’s website. I have similar problems with balance and driving. There are some exercises that will help with your balance. I will see if I can find the link and post it.

After the neurologist told me there was no magic bullet for the numbness/tingling I decided to step up my search and found several closed Facebook groups on neuropathy. I had joined a couple of them before finding one that works for me because they offer a solution where the other groups were more for support and sharing stories/diagnosis. This group https://www.facebook.com/groups/SPNPD/ – Solutions for Peripheral Neuropathy Pain & Discomfort has put together a protocol of supplements that will help with repairing the nerves. It may not work for everyone but they have a very high number of success stories and over 3000 members in the group, all with different PN and multiple other diagnosis. The group sells nothing and has recently obtained their 501c3 status which is a plus for me. I started taking the protocol in the first week in September 2016 and when I started the numbness/tingling was in both legs down through the toes starting just below the knees. It is now just above the ankles so even if it doesn’t total repair the nerves down through the toes I’m happy because it has reverse the progress of the disease. I also have polymyalgia rheumatica and it has been in remission for about 6 or 7 years but it came back this past August so I had to start taking prednisone for it. I’m currently trying to titrate off of the medication but it’s not going well so will just have to keep working on it.

I would recommend taking a look at the protocol and then discussing it with your neurologist or primary care physician.

Good luck and don’t give up, there is hope!

John

Jump to this post

Hammertoes were mentioned. I had 4 toes “operated” on. It is like nothing – I continued driving to my errands after that. Could not go into a pool right away but, easy. If he had done the big toe it would have been a much longer recovery. More joints. I highly recommend this. Only occasional neuromas but, the After is great. Actually neuromas don’t seem to impact me any more, maybe it was the surgery – I don’t know.

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for NP ,Vitamin B12 is often prescribed. Many people take Gabapentin or Lyrica too.

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Thank you. I do take a B12 shot each month.

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@caf132

I have neuropathy in my feet and fingers. It is a side effect of the Taxol chemotherapy I finished in October. No improvement after 3 months.

Jump to this post

see the neurologist for an EMG. Take Vit. B12 or B complex. Many people take either Gabapentin or Lyrica.

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