Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

Interested in more discussions like this? Go to the Neuropathy Support Group.

@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.

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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

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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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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.

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

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@ridgerunner

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

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Ask your neurologist. Check Mayoclinic and Webmd.

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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.

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As far as I know, there are three,or more, types of Neuropathy:

Diabetes (mine);idiopathic(Unknown source) and injury.

In my senior residence,two of the people have idiopathic,one diabetic and one from a car accident. The latter takes medication but I have no details. One idiopathic case takes Lyrica, with good results, and the other two take Gabapentin.

I take 300 mg Gaba twice daily.

There is a genetic component tp this condition.

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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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You do not mention taking Vit B12.Also,you do not mention whether you tried Lyrica or Gabapentin or any traditional medicine!

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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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WOW! 1200 mg sounds high, but it is not my PN. I take 300 twice daily and can go to 900 total.

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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

Jump to this post

I do take Vit B 12 shots. but not the other medicines.

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