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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.

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kblakely | @kblakely | Feb 28, 2023
In reply to @madison2023 "I have been wearing Hokas since December and I really like them. I walk 3-4 miles..." + (show)
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I have been wearing Hokas since December and I really like them. I walk 3-4 miles 5-6 days a week. They provide support and are very light.

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I have been wearing Sketcrs or Olukai tennis shoes = the more support they have the better.

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casey1329 | @casey1329 | Feb 28, 2023
In reply to @njed "@dbeshears1 - On your post, I can almost assure you that if or when a treatment..." + (show)
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@dbeshears1 - On your post, I can almost assure you that if or when a treatment plan is discovered to cure PN, you will not get that call back to come in. Just my opinion here, there are over 100 different types of neuropathies and if that isn't bad enough, well over 100 various causes. No doubt, one of the leading causes is diabetes. But, when you begin to think about the low numbers of people under 30 years old with PN and the number of people over 50 with PN, no doubt, age has to be considered. Could the cause be related to the things we do over our life, like falls or is it from taking certain meds like antibiotics or outside effects that we are exposed to during our life like toxins or did we inherit PN. Or a combination of things. It is hard to pin down which makes this difficult. Neuro docs can't look into our past but if they could, they might see a clue. Even so, what is the cure? At one point, I wanted to know the cause of my PN. My neuro doc said what's the difference, there is no cure even if you do find out the cause. Hmmm...good point! I stopped looking at the why and figured I better look into how to live with this the best I can. Each person has to figure out their best way to live with PN. Best to all in 23!

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One very overlooked cause, alcoholism. My husband saw several neurologists. One put him on medication for Parkinsons. Another gave him infusions for CIDP. Then, finally one said to stop drinking. My husband did and still has the nerve damage in his feet but overall is doing much better. So in my husbands case knowing the cause was very important. Yet, this simple cause was overlooked by several doctors. Good luck to you.

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aaron_az | @aaroncush | Feb 28, 2023
In reply to @finny4606 "I was diagnosed with CRPS, is anyone familiar with that? Recently I was seen by a..." + (show)
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I was diagnosed with CRPS, is anyone familiar with that? Recently I was seen by a new orthopedic surgeon who believed I was misdiagnosed and he sent me to a spine specialist, who said I needed cervical spine surgery but there was no guarantee that it would stop my leg pain. I have requested a visit at Mayo Clinic and I am waiting to see if I am accepted.

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I was diagnosed with CRPS after too many surgeries on my foot/ankle started causing phantom pain. It has slowly calmed down over the last 12+ years but walking barefoot or sleeping with my legs together (side sleeper) is uncomfortable still.

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decrepit | @decrepit | Feb 28, 2023
In reply to @njed "@dbeshears1 - On your post, I can almost assure you that if or when a treatment..." + (show)
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@dbeshears1 - On your post, I can almost assure you that if or when a treatment plan is discovered to cure PN, you will not get that call back to come in. Just my opinion here, there are over 100 different types of neuropathies and if that isn't bad enough, well over 100 various causes. No doubt, one of the leading causes is diabetes. But, when you begin to think about the low numbers of people under 30 years old with PN and the number of people over 50 with PN, no doubt, age has to be considered. Could the cause be related to the things we do over our life, like falls or is it from taking certain meds like antibiotics or outside effects that we are exposed to during our life like toxins or did we inherit PN. Or a combination of things. It is hard to pin down which makes this difficult. Neuro docs can't look into our past but if they could, they might see a clue. Even so, what is the cure? At one point, I wanted to know the cause of my PN. My neuro doc said what's the difference, there is no cure even if you do find out the cause. Hmmm...good point! I stopped looking at the why and figured I better look into how to live with this the best I can. Each person has to figure out their best way to live with PN. Best to all in 23!

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I agree that we all must deal (individually.) But, I would like to suggest that learning more about your neuropathy may be a good thing. The VA suggested, without verification, that I had CMT. There is some research on CMT, and I wanted to get into studies. Also, it is sometimes treated a little differently than other types.
I paid for blood work (outside the VA) that ruled out CMT and ~35 other kinds of PN. I found that my PN was length dependent axonal motor and sensory neuropathy complicated by back problems. After a period of anxiety, this was helpful!
When I got Sanexas treatment, I had the electrodes applied to my back, instead of my feet. I got relief from the infernal itching this way. I also got PT. Dry needling was done at pressure points. One of these points is on the outside of the leg, just below knee level. Now, when I feel my legs and ankles are tight, I massage the area that I had previously ignored, with good results.
I believe that I would have tried Gabapentin or some other toxic drug, if I hadn't found out more about my particular problem.
"What's the difference?" I got some piece of mind, and some relief, and a long term coping plan. I fully embrace the thought that each person has to figure out their own path. Please don't refrain from testing, if you feel it might help.
Good health and happiness!

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26sabrina | @26sabrina | Feb 28, 2023

Hi Sal99. You are doing all the right things by seeking more information about your neuropathy. Unfortunately, right now no one knows the exact cause or is there a cure. I wish you luck and as with all I also send a prayer.

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NJ Ed | @njed | Feb 28, 2023

@decrepit - Believe me, I wasn't happy with the doctor who said that to me...what's the difference...in most cases, I've found neuro docs not to have the best bed side manners. And I did not return to that doctor. I agree with many aspects of your post, and I too was checked for CMT as I have the same symptoms as you and in the past 7 - 8 years, I've gone thru my share of tests and if you've ever been to Mayo in MN, you know what I mean. I too have lower back issues and to a certain degree, I feel that is the root of my PN. Yet, two top level neurosurgeons tell me no. I've run into a lot of brick walls and have traveled over 3500 miles in 7 years to get my answers. I am glad you were able to get a cause for your PN and developed a long-term plan to cope with this disease. You are fortunate. I too believe 100% that each person needs to do what is necessary to try and determine a cause for their PN. Be well!

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decrepit | @decrepit | Feb 28, 2023

Doctors, right?
Had an MRI?
If you feel like your back may be part of the problem, have you tried anything for it? The same VA neurosurgeons that did my neck and back surgeries say that I shouldn't have the problem. But, I know that drs are defensive of their work and the work of other drs. I have caught them in lies and mis-diagnoses.
There is a PT YouTube channel called "Bob&Brad" that provides a lot of exercises, stretches, etc.. I try to absorb as much info as I can from every resource I find, then assimilate it in a form that works for me. Now, I walk, stretch, use a massager and an inversion table. Can't get motivated to diet, yet, though.
Good Health & Happiness

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NJ Ed | @njed | Feb 28, 2023
In reply to @decrepit "Doctors, right? Had an MRI? If you feel like your back may be part of the..." + (show)
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Doctors, right?
Had an MRI?
If you feel like your back may be part of the problem, have you tried anything for it? The same VA neurosurgeons that did my neck and back surgeries say that I shouldn't have the problem. But, I know that drs are defensive of their work and the work of other drs. I have caught them in lies and mis-diagnoses.
There is a PT YouTube channel called "Bob&Brad" that provides a lot of exercises, stretches, etc.. I try to absorb as much info as I can from every resource I find, then assimilate it in a form that works for me. Now, I walk, stretch, use a massager and an inversion table. Can't get motivated to diet, yet, though.
Good Health & Happiness

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Yes, MRI 2014, 2017, 2021 and all showed "issues" which they call narrowing in L-3 to S-1 but not enough to cause the PN I'm experiencing. I've watched Bob and Brad several times and also tried their exercises which have caused back pain. Presently, I'm in PT for balance therapy and I get a good work out there.

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michael149 | @michael149 | Feb 28, 2023
In reply to @sal99 "Coleen. I have neuropathy but not sure what itis called. I have numbness in hands feet..." + (show)
Profile picture for sal99 @sal99

Coleen. I have neuropathy but not sure what itis called. I have numbness in hands feet legs arms and-some in the stomach. The most trustrating thing is I cannot get my doctors to agree what is causing it. I am a lung cancer .
Survivor . I was diagnosed in November 2011. I have been on two different targeted therapies and have radiation and chemo as well. Through blood tests they found an autoantibody called LGM. I have had multiple tests done to see jif this is causing the neuropathy. Has anyone else been diagnosed with this autoantibody? I am trying to get an appointment with Mayo to see what their Doctors thunk is causing this. Ii am looking for a Doctor that would be a good fit with all my problems. Oh I forgot to mention I was diagnosed with Lupus in 2020. Thank you for allowing me to join the group.

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it id caused by various things-have you taken any anti-psychotic drugs like haldol or anything else-what about your psoas muscle in you spine that I beleive can tigten you peripheral nerves in those area-suggest you see a pt who specializes in neuropathy to learn exercsies 3x per day and also get a neurological exam-you have got to be your own advocate Colleen-god bless you Mike storman-advocate for the handicappedd

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as143 | @as143 | Mar 1, 2023
In reply to @njed "@dbeshears1 - On your post, I can almost assure you that if or when a treatment..." + (show)
Profile picture for NJ Ed @njed

@dbeshears1 - On your post, I can almost assure you that if or when a treatment plan is discovered to cure PN, you will not get that call back to come in. Just my opinion here, there are over 100 different types of neuropathies and if that isn't bad enough, well over 100 various causes. No doubt, one of the leading causes is diabetes. But, when you begin to think about the low numbers of people under 30 years old with PN and the number of people over 50 with PN, no doubt, age has to be considered. Could the cause be related to the things we do over our life, like falls or is it from taking certain meds like antibiotics or outside effects that we are exposed to during our life like toxins or did we inherit PN. Or a combination of things. It is hard to pin down which makes this difficult. Neuro docs can't look into our past but if they could, they might see a clue. Even so, what is the cure? At one point, I wanted to know the cause of my PN. My neuro doc said what's the difference, there is no cure even if you do find out the cause. Hmmm...good point! I stopped looking at the why and figured I better look into how to live with this the best I can. Each person has to figure out their best way to live with PN. Best to all in 23!

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You do have a point however though there is no cure, if the cause can be determined you have a better chance of controlling it.

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