@bob1946 - I have large and small fiber neuropathy. - idiopathic axonal PN. Numbness, poor balance just two of several issues. The brace I use is an ankle foot orthotic covered by my insurance. Without these on which is not often, I must use a cane. With them on, I rarely use a cane unless I'm walking outside on uneven surfaces. Diagnosed in 2015 at Mayo in MN. Ed
Thanks Ed, do you wear your brace on one or both feet. One more question, is there a recommendation out there on what to use to give a little pep in my step, I have always been active but ever since I got this nerve damage, it’s something I’am not used to. Thanks
@bob1946 - I have large and small fiber neuropathy. - idiopathic axonal PN. Numbness, poor balance just two of several issues. The brace I use is an ankle foot orthotic covered by my insurance. Without these on which is not often, I must use a cane. With them on, I rarely use a cane unless I'm walking outside on uneven surfaces. Diagnosed in 2015 at Mayo in MN. Ed
Were they not able to help you with any of your issues? I keep wondering-after reaching a conclusion from every test that you have neuropathy-do they suggest and try a number of treatments? Would love to know what the Mayo Clinic doctors do to treat the patient. Is everyone alot better after they have been there? Would make an appointment and go there (if accepted (what criteria do they look for to be accepted?) if my neuropathy pain would be
alot better.
@bob1946 - I have large and small fiber neuropathy. - idiopathic axonal PN. Numbness, poor balance just two of several issues. The brace I use is an ankle foot orthotic covered by my insurance. Without these on which is not often, I must use a cane. With them on, I rarely use a cane unless I'm walking outside on uneven surfaces. Diagnosed in 2015 at Mayo in MN. Ed
Thanks Ed, do you wear your brace on one or both feet. One more question, is there a recommendation out there on what to use to give a little pep in my step, I have always been active but ever since I got this nerve damage, it’s something I’am not used to. Thanks
@bob1946 Bob, I actually have bilateral drop foot. It started with numbness which in time did develop into drop foot. The braces I wear are called AFO's (walk-on-flex brand name) and insert into shoe and strap around calf. I was in PT at the time, my physical therapist asked my primary doc for a script so insurance would cover cost. These give me a heal - toe walk, no longer slap floor with foot and no longer trip. These help tremendously with balance as well. My pep in my step is gone and I walk about 1/4 of my speed prior to getting PN. I have no medical background. But I find the more active I am, the better I feel. Ed
Were they not able to help you with any of your issues? I keep wondering-after reaching a conclusion from every test that you have neuropathy-do they suggest and try a number of treatments? Would love to know what the Mayo Clinic doctors do to treat the patient. Is everyone alot better after they have been there? Would make an appointment and go there (if accepted (what criteria do they look for to be accepted?) if my neuropathy pain would be
alot better.
I went to Mayo looking for answers. Living over 1000 miles from Mayo in MN, I had no intention of being treated there. If they had a treatment for my PN, I would have established a treatment plan with my neurologist. However, they said for me no cure is available. I'm not a diabetic. They suggested physical therapy would be helpful. Based on what I'm told, a treatment plan can be offered IF the underlying cause of the PN is established. So, you see, that is why I applied at Mayo and was hopeful they would provide the why I have this. I don't know the criteria Mayo uses but I did supply them with copies of every test I had from 2015 to 2019. They did tests to rule things out. For example, I do not have autonomic issues but suggest I have both small and large fiber. Also, suggested perhaps genetic testing would provide answers. I think it is best to look at Mayo as a place to get answers and they might suggest things to help you and follow up with your own doctor. Good luck. Ed
My biggest problem is my balance. Also, I can’t walk very far before my legs get tired. I don’t take any medicine. Any help with my balance would be greatly appreciated.
Any number of Youtube clips on how to improve your balance, and other ones on how to strengthen your legs and knees. Slow but steady progress is possible, I have found,
@bob1946 Bob, I actually have bilateral drop foot. It started with numbness which in time did develop into drop foot. The braces I wear are called AFO's (walk-on-flex brand name) and insert into shoe and strap around calf. I was in PT at the time, my physical therapist asked my primary doc for a script so insurance would cover cost. These give me a heal - toe walk, no longer slap floor with foot and no longer trip. These help tremendously with balance as well. My pep in my step is gone and I walk about 1/4 of my speed prior to getting PN. I have no medical background. But I find the more active I am, the better I feel. Ed
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Are you asking me or @bob1946 ??
Ed
Thanks Ed, do you wear your brace on one or both feet. One more question, is there a recommendation out there on what to use to give a little pep in my step, I have always been active but ever since I got this nerve damage, it’s something I’am not used to. Thanks
Were they not able to help you with any of your issues? I keep wondering-after reaching a conclusion from every test that you have neuropathy-do they suggest and try a number of treatments? Would love to know what the Mayo Clinic doctors do to treat the patient. Is everyone alot better after they have been there? Would make an appointment and go there (if accepted (what criteria do they look for to be accepted?) if my neuropathy pain would be
alot better.
Sorry Ed, I was asking Bob.
Bob, could you please be more specific about the type of foot brace you are using. Your condition seems to be a lot like mine.
@bob1946 Bob, I actually have bilateral drop foot. It started with numbness which in time did develop into drop foot. The braces I wear are called AFO's (walk-on-flex brand name) and insert into shoe and strap around calf. I was in PT at the time, my physical therapist asked my primary doc for a script so insurance would cover cost. These give me a heal - toe walk, no longer slap floor with foot and no longer trip. These help tremendously with balance as well. My pep in my step is gone and I walk about 1/4 of my speed prior to getting PN. I have no medical background. But I find the more active I am, the better I feel. Ed
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1 ReactionI do. I have it from my waist down, and then my fingertips to my elbows.
I went to Mayo looking for answers. Living over 1000 miles from Mayo in MN, I had no intention of being treated there. If they had a treatment for my PN, I would have established a treatment plan with my neurologist. However, they said for me no cure is available. I'm not a diabetic. They suggested physical therapy would be helpful. Based on what I'm told, a treatment plan can be offered IF the underlying cause of the PN is established. So, you see, that is why I applied at Mayo and was hopeful they would provide the why I have this. I don't know the criteria Mayo uses but I did supply them with copies of every test I had from 2015 to 2019. They did tests to rule things out. For example, I do not have autonomic issues but suggest I have both small and large fiber. Also, suggested perhaps genetic testing would provide answers. I think it is best to look at Mayo as a place to get answers and they might suggest things to help you and follow up with your own doctor. Good luck. Ed
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2 ReactionsAny number of Youtube clips on how to improve your balance, and other ones on how to strengthen your legs and knees. Slow but steady progress is possible, I have found,
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2 ReactionsThanks Ed , I will take a look at them.
Bob