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 group.

@pskroback

Yes. Tommy Cooper with silicone dots. I've had them about 10 days and dots are starting to come off. Copper Fit brand with vinyl or rubber lines. Just don't grip. Tried several other brands from Amazon, most with the line type gripping material. None work well. I should say that I have weakened grip in both hands as well as the neuropathy. Neurologist said after last Nerve Conduction Study that I had about 50% motor nerve transmission. My left hand, my dominant hand, he said was "just all messed up". I hate those technical terms. So I'm fighting numbness and loss of motor nerve transmission in both hands.

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That's definitely the pits @pskroback. The Foundation for Peripheral Neuropathy has a lot of patient related resources and information you might find helpful — https://www.foundationforpn.org/resource-library/

Have you looked into any alternative or complementary treatments to see if anything might help a little? — https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

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Thanks for the links. Right now my dog is having trouble getting up and walking. 13 yrs old. I'll check links later.

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@pskroback
My hands haven't been affected by my Neuropathy.
But I was wondering if you had trouble buttoning clothes, using zippers,
tying shoes, dialing the phone, putting a key in a lock or writing? Basically using fine motor skills.
Jake

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Yes. I wear mainly pullover shirts, t-shirts, Polo etc., slip on shoes and sneakers. Sketchers makes some real comfortable one. Zippers, dialing phone and key are a problem yet. Putting my meds in my weekly organizer is a problem. Luckily my son live only a few minutes away. He comes over once a week to do that for me. Then all I have to do is open the section for that time of day and dump them into a small plastic shot glass looking thing. I do this over a lap tray with a towel on it. This way if I drop or spill one, they will probably hit tray. With towel, they won't bounce. Or at least not as bad as hitting the uncovered towel. In general though, the fine motor skills are a problem as well as being able to grip/hold things. Hope this helps some.

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Is there, are there really any treatments? I have about 20%use of my right hand 70% of my left hand and continue to deteriorate. I read the sanexas scam articles and am feeling a tad depressed. source of neuropathy is from reconstuctive surgeryc2-c6.

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@dongoldwater

Is there, are there really any treatments? I have about 20%use of my right hand 70% of my left hand and continue to deteriorate. I read the sanexas scam articles and am feeling a tad depressed. source of neuropathy is from reconstuctive surgeryc2-c6.

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Welcome @dongoldwater, Pain from neuropathy can be a difficult thing to treat like you have found out and there are a lot of companies making money off of neuropathy patients seeking relief from their pain. I have no medical background or training but think some of this is due to the type of neuropathy, it's cause and the fact that each of us are different when it comes to pain threshholds. I think Sanexas has really helped some people including one of our members @duquer who shared his story here – https://connect.mayoclinic.org/comment/645606/.

I don't think it would help my neuropathy as I only have numbness and no pain. Also, my neuropathy diagnosis is idiopathic small fiber peripheral neuropathy. I shared my story and what helps me here – https://connect.mayoclinic.org/comment/310341/. While I feel the supplements I take have helped me and possibly slowed or stopped the progression, they may or may not work for others.

So, my thoughts are there are a lot of treatments available and unfornately it's up to us to find one that helps. That's why I try to encourage members to learn as much as they can about their diagnosis and become a better advocate for their health and treatments. My neuropathy diagnosis is the pits compared to my polymyalgia rheumatic (PMR). If my PMR comes back, I just have to take prednisone until I'm able to taper off it with little to no pain remaining.

It sounds like your neuropathy pain is a result of nerve damage or compression from your spine surgery. There is a discussion on Myofascial Release Therapy (MFR) that others have found helpful in relieving pain from neuropathy and other conditions.
— Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

The Foundation for Peripheral Neuropathy also has a list of complementary and integrative treatments that you might find helpful here — https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

Have you heard of Myofascial Release Therapy or tried any other types of treatments?

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@johnbishop

Welcome @dongoldwater, Pain from neuropathy can be a difficult thing to treat like you have found out and there are a lot of companies making money off of neuropathy patients seeking relief from their pain. I have no medical background or training but think some of this is due to the type of neuropathy, it's cause and the fact that each of us are different when it comes to pain threshholds. I think Sanexas has really helped some people including one of our members @duquer who shared his story here – https://connect.mayoclinic.org/comment/645606/.

I don't think it would help my neuropathy as I only have numbness and no pain. Also, my neuropathy diagnosis is idiopathic small fiber peripheral neuropathy. I shared my story and what helps me here – https://connect.mayoclinic.org/comment/310341/. While I feel the supplements I take have helped me and possibly slowed or stopped the progression, they may or may not work for others.

So, my thoughts are there are a lot of treatments available and unfornately it's up to us to find one that helps. That's why I try to encourage members to learn as much as they can about their diagnosis and become a better advocate for their health and treatments. My neuropathy diagnosis is the pits compared to my polymyalgia rheumatic (PMR). If my PMR comes back, I just have to take prednisone until I'm able to taper off it with little to no pain remaining.

It sounds like your neuropathy pain is a result of nerve damage or compression from your spine surgery. There is a discussion on Myofascial Release Therapy (MFR) that others have found helpful in relieving pain from neuropathy and other conditions.
— Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

The Foundation for Peripheral Neuropathy also has a list of complementary and integrative treatments that you might find helpful here — https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

Have you heard of Myofascial Release Therapy or tried any other types of treatments?

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Thanks for the info. No I have not heard of anything my doctor (an internist) thinks I am making it all up so I am now looking on my own. Do you have any though doctors I could see in the phx metro area (my surgeon died 10 yrs ago). I am thinking of I should have an MRI is this a waste of $?

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@dongoldwater

Thanks for the info. No I have not heard of anything my doctor (an internist) thinks I am making it all up so I am now looking on my own. Do you have any though doctors I could see in the phx metro area (my surgeon died 10 yrs ago). I am thinking of I should have an MRI is this a waste of $?

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I think since you mentioned Phoenix area if it were me I would try to get an appointment at Mayo Clinic Arizona, especially if there is a possibility of a compressed nerve from a previous surgery causing the nerve pain and other symptoms.

If you would like to seek help at Mayo Clinic Arizona, the contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

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@dongoldwater

Thanks for the info. No I have not heard of anything my doctor (an internist) thinks I am making it all up so I am now looking on my own. Do you have any though doctors I could see in the phx metro area (my surgeon died 10 yrs ago). I am thinking of I should have an MRI is this a waste of $?

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In my quest for answers, I wanted an MRI just like everyone else seemed to get as they were trying to be diagnosed. My first Neurologist (I lived in a different state then) wanted to do one, but I had an implanted defibrillator with metal that prohibited one. So last year, after my ICD finally died after an extraordinary battery life, I asked for new wiring to go with the replacement so it could be up to modern standards and be MRI friendly.
However, I was with a different Neurologist then and he wouldn’t do it, said that it wouldn’t tell us anything. He said we already knew I had idiopathic severe loss axonal nerve PN, and MRI would be a waste. I was in the process of changing Neurologists, and my new Neurologist concurs with the other one. My first impression of this Neurologist is very very good, especially since he replaced one that’s beyond words to describe how awful he was; so I want to trust the new doc. The seedling of doubt I have is that the two of them work for the same medical department, and I just think I’d have closure if I had an MRI to be “positive “ nothing else is going on.
So I’m working on trying to get over not being able to get an MRI. 19 years ago I was having strange heart rate increases, and near-fainting episodes and wanted a stress test, but my doctor laughed it off, saying I was a physically fit marathon runner, and it’s normal for a professional 39 yr old woman to be anxious or stressed, and a happy pill would help (took 1, then threw the bottle away). Three weeks later I found out I had dropped dead (Sudden Cardiac Death) while on an exercise run; woke up after being on life support several days, with a good diagnosis of my heart issue and my new life started with an ICD. My doctor visited me in the hospital daily (back then they did that!). He cried, he felt worse than I did for not ordering the cardiac tests.
I survived and started advocating more for my health then. A couple of years ago, my new/first ever ENT wanted to watch a growth on my neck, since I was a new patient. A medical university had actually found the lump in a scan 10 months earlier but failed to share the scan results with anyone, so I found out only because it was in the records I requested when I was moving out of state. This ENT hadn’t received my official reports from this terrible hospital yet, but took my word and paper copy of the test I had, and did the biopsy instead of waiting 4 more months until a next appointment. Sure enough, it was cancer. So I have had success in stepping up my advocacy, I just can’t get this MRI though. So I’ve been using some positive thinking and coping strategies recommended by folks here, and trying remove that little doubt I have of an MRI being worthless for me.
Good luck with your decision, if you’re given an option. For me, I’d like the closure of knowing for sure it does or doesn’t add value, as several other things in my medical life have been the exception to the rule. But it’s a personal choice if offered.

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@pskroback

Yes, I have it in both hands and both legs below the knees. Compression socks helps the feet and lowers some.
Compression gloves helps the coldness in my hand but does not help my grip. Constantly spill or drop things. Does anyone know of a brand of compression gloves that have good gripping aids on palms and finger? I've tried the Tommy Copper, Copper Fit and several nameless ones from Amazon. Thanks.

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I’ve kind of scanned through posts about “Compression” socks because I assumed they were just for circulation, which I’ve been told I’m ok. But our symptoms almost sound identical, my hands and feet can get dreadfully cold at times. Gabapentin has greatly reduced this for me, but though I wear thick socks all the time for cushioning (along with my Skechers too), are you saying that official comprehension socks help better with cold feet? I feel kind of dumb for asking

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