Mayo Clinic Connect
Anyone here dealing with peripheral neuropathy?
Liked by John, Volunteer Mentor, peggyj4411, jazzy27, heather074 ... see all
I have been dealing with painful peripheral neuropathy for about 10 to 12
years. My main pain is in the bottoms of my feet but the neuropathy has
worked up to my knees. You talk about a frustrating experience. I
have tried every prescription, compounds, Anodyne therapy, Acupuncture and
Spinal Cord Stimulator. I am on a new and improved Spinal Cord Stimulator
now. I was told when all else fails the last thing they can do is a Pain
Pump. Well I have had that for about 2 years and get a steady dose of
Hydromorphone, Fentanyl and Bupivicaine every day, all day long. I can
also take up to 4 Hydrocodone a day and I also take Lyrica. I have had
Bilateral Endovenous Laser Ablation in both legs and Tarsal Tunnel surgery
on both ankles.
My average pain level is 5 to 6 every day. Now my only hope is that one
of the programs of the new Spinal Cord Stimulator will help. I am
seriously considering going to Mayo Clinic. Would be an expensive trip
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I just had the trial BurstDR. This is the Spinal Cord Stimulator that is “silent.” I did notice some improvement with the stinging I have in my feet but it was hard to tell because I had it for seven days and had some good days and some bad days. I’m praying about what to do.
Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.
How long have you been dealing with peripheral neuropathy?
Hello @16jody! I fully sympathize with your miserable condition! I suppose you have been tested for Restless Legs Syndrome, which can give a person the worst nighttime torture. If you haven,t tried ReQuip–I am currently taking this–maybe your doc can prescribe a low dose of Valium at bedtime. I am also taking over–the–counter magnesium supplements. The magnesium really helped my spasms more than anything. And no side effects. Right now I can,t think of anything else, except prescription drugs. Good luck, 16Jody, and I will be thinking about you. Oh–the magnesium is for the severe muscle spasms I have. Best Wishes, Peggy
Thank you so much for your reply. I have been tested, I think for every thing and the neurologist just doesn’t know what is causing this. I’ve never heard of ReQuip. Is it prescription? I do take magnesium at night. As far as the Valium, haven’t tried that either. I actually didn’t have any spasms last night. I’m praising the Lord today. I put that bar of soap under the sheet last night, my husband and I both thought why not?☺️ At this point I’m willing to try most anything. What does the ReQuip do? Thank you so very much again. Jody
ACCORDING TO THE MAYO CLINIC website,Requip is for Parkinson’s and,or, RLS (Restless Legs Syndrome).
Liked by John, Volunteer Mentor
I do not think everyone got my post the other day. I was asking anyone that might have some questions for my doctors appt. on May 16 th. If he suggest surgery. My neuropathy is from inhaling Carbon Monoxide. I have had it since Sept. Of 08. I told you guys before that I had been on heavy pain Meds for a long time until a couple of months ago. And now I am on Soboxone. Not really sure how much it is helping. Anyway I have been working with this docotor in New Jersey for my foot dop and at this point he thinks it is to late to correct that, but I am having another EMG just to,be sure. The latesed EMG he had was from 2013. Anyway I thought I would ask him if he could help with my neuropathy and his assistant wrote me back and told me Geat News and already had a date set up for surgery. Wow, was I surprised. So, I told her I wold like to wait and get the EMG back and he what he says about my foot dop. Just wanted to give you guys some background of what was going on. Anyway I would greatly appreciate any questions you think that I should ask him about the surgery that I have not thought of. Thanks to everyone. This doctor that I am seeing on the 16th is very close to where I live. Another plus..
Liked by John, Volunteer Mentor, peggyj4411, jewel8888
Hello @mikween, If it were in your place I would want to wait until I received the EMG and met with a neurologist to see it the diagnosis for your neuropathy has changed and if there are any underlying conditions causing the neuropathy (compressed nerves, damaged nerves, etc..). Then I would want specifics about the surgery – what is being done specifically and what the doctor is trying to correct fix that will help with the neuropathy. I would also want to know specifically what are the risks involved – what happens if the surgery goes wrong, could it get worse? If the surgery is a success what can I expect? I guess my last question would be what is the success rate for the surgery.
Good luck on whatever you decide.
Liked by SanibelSandy, Colleen Young, Connect Director, peggyj4411
I saw your message and if i can help im any way pls ask. I had foot drop in my left foot in 3001 and they quickly had me in for surgery, a disctectomy on my lumbar, L5-S1. I had to go backbin for a fusion several months later. Im wishing you gad EMG results too, but i dont renember having it done. I did get an EMG of arms before neck surgery.
My best to you, im glad your asking questions, its so important to understand and be prepared.
Liked by John, Volunteer Mentor, peggyj4411
Hi@jewel8888, so did the surgey correct your foot drop? And how long did you have it before they did the surgey? I think that I am past the point for them to correct the foot drop. But I a. Hoping that they can correct my neuropathy.
Greenville50. This is my first time to post. I shared a number of things I have tried.Like i
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Hi, @jewel8888, did the foot drop surgery work for you? And if it did how long had you had the foot drop before the surgery. I have had mine since sept. Of 08. So, it might be to long for them to correct it. I am waiting on another EMG to have them look at it. But in the meantime I am having someone looking at my neuropathy to see what they can do about that. Someone told me the other day they could help me and already had a date scheduled for the surgery. But I told them let's wait and see what the EMG says about my Foot Droo. Perhaps they could fix them at the same time. Wishful thinking. And besides they are out of New Jersey and I am in. Texas.So, I find a doctor in Texas that is going to look at my neuropathy on May 16 th, and see what he says. It would just be great to be out of this pain all of the time. Thanks for all of your help. If you do not mind me asking where did you have your surgery done?But
Hi, @johnbishop thanks for all of your input
I have been reading about Nerve Renew and wondering if anyone tried it. I have Idiopathic neuropathy and will almost take anything for the pain and be able to live normaly again. I take 300 mg 3 times a day and helps a little but still can’t wear nice shoes or walk long distances or sometimes just around the house. If anyone has tried this please let me know. twinky
I have used soap (almost any kind) for many years now. My mother told me about it and I only have to use the soap with a bar under the sheets. If it slips out from there you will know and get up and put it back. Good luck. Hope you have the great results that I have had.
I mean 300 mg of Gabapenten 3 times a day.
Hello @twinky, I too saw the ad for Nerve Renew when I started looking for things to help with my peripheral neuropathy. It made sense from some of the ingredients but I’m still a little suspect. I also have a little concern about the amount of B6 listed in the ingredients based on some research I’ve done in the past.
Mayo Clinic on B6 Safety, Side Effects and Warnings – http://mayocl.in/2qK67Ov
More info on B6 toxicity – http://bit.ly/2gu54w3
Here’s a couple of topics that may help with your decision on trying it:
Mayo Connect members tips avoiding scams and snake oil cures
FDA’s HEALTH FRAUD PAGE
Liked by Colleen Young, Connect Director
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