Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

@maylily

I'm 79 yo & have numbness in feet & slightly in hands. Have had back issue for yrs. GP referred me to Neurologist but virus halted that. What can I expect when I do go?

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Hello @maylily, Welcome to Mayo Clinic Connect. You will notice we moved your post to the Living with Neuropathy – Welcome to the group discussion so that you can meet other members who have similar symptoms and learn what they have shared. The Mayo Clinic website has information on the diagnosis and treatment for peripheral neuropathy here: https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/diagnosis-treatment/drc-20352067.

You may also be interested in reading through the following discussion:
Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Has your GP lined up any tests prior to getting your appointment with the neurologist?

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@johnbishop

Hello @maylily, Welcome to Mayo Clinic Connect. You will notice we moved your post to the Living with Neuropathy – Welcome to the group discussion so that you can meet other members who have similar symptoms and learn what they have shared. The Mayo Clinic website has information on the diagnosis and treatment for peripheral neuropathy here: https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/diagnosis-treatment/drc-20352067.

You may also be interested in reading through the following discussion:
Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Has your GP lined up any tests prior to getting your appointment with the neurologist?

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Orthopedic surgeon lined up with neuro last week. I had the nerve conduction test, emg &!” Many labs. Diagnosis was progressive polyneuropathy, from here I go back to surgeon. He will review neuro’s final report & review my mri’s, visits, CT’s & xrays. I feel a little lost, as if I should be more proactive now, just have to be patient.

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@fuzzy1southernga

Orthopedic surgeon lined up with neuro last week. I had the nerve conduction test, emg &!” Many labs. Diagnosis was progressive polyneuropathy, from here I go back to surgeon. He will review neuro’s final report & review my mri’s, visits, CT’s & xrays. I feel a little lost, as if I should be more proactive now, just have to be patient.

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@fuzzy1southernga You mentioned sciatica, slipped vertebra & facet joint disease in your previous post. Are you meeting with your orthopedic surgeon to discuss a surgery? I know you mentioned being in a lot of pain. Have you heard of Myofascial Release Therapy? There is a discussion on Connect that may offer some helpful information.

Myofascial Release Therapy (MFR) for treating compression and pain:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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@johnbishop

@fuzzy1southernga You mentioned sciatica, slipped vertebra & facet joint disease in your previous post. Are you meeting with your orthopedic surgeon to discuss a surgery? I know you mentioned being in a lot of pain. Have you heard of Myofascial Release Therapy? There is a discussion on Connect that may offer some helpful information.

Myofascial Release Therapy (MFR) for treating compression and pain:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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Thanks John! No I have not, I have already learned so much from your forum, this is a fantastic site! Y’all are so helpful!

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@fuzzy1southernga

Thank you for this forum. I have not advised my family of my diagnosis of idiopathic progressive polyneuropathy. Seems I am trying to brush it off, but pain is a glaring constant reminder. I attend appointments by myself due to Covid. My thoughts are with each & everyone experiencing this complicated ailment.

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@fuzzy1southernga

This has been a good forum for me, as well. I've had idiopathic small fiber peripheral polyneuropathy for 7+ years. It was diagnosed in 2013.

Sometimes I prefer to see a doctor alone also. I haven't been able to see the neurologist since February and my next appointment with her was bumped 3 months out. When doctors were seeing patients again I had my appointment moved back several weeks, but since then I've been called twice to change the date. So now it's back to the day they bumped me to, at the end of June. If she weren't such a good doctor I might be looking for a different one. The more they postpone it the worse my pain is.

What areas are affected by neuropathy? Mine started with pins and needles in my feet and legs, then pain was in the balls of my feet, but over the past few months it's spread to include the tops of my feet and ankles, and I feel it moving up my legs. I'm a person who wants to have life organized. That's not possible with neuropathy because every person has their own unique progression. The neurologist can tell us that it is a progressive illness, but they can't predict a prognosis.

You said that the pain is bad at night. Are there other times when it flares up? Every time I lie down my feet jump up to at least 8. Same thing with the recliner. Are there any things that you've found that ease the pain? Have you tried many medications? I hope you will hit upon the right one sooner than later.

I had a Burst DR spinal cord stimulator implant in June of 2015. It was wonderful! I had 80% pain reduction. It continued to be effective for a year. During the second year I had to get the settings adjusted every 3 months. Since the start of 2018, the adjustments have been less and less helpful. I turned it off for the month of March, and then turned it on again, and I could feel no difference. Again, we are each unique in how we respond to the multitude of treatments. For some people, the SCS implant is effective much longer, while others don't find it effective at all. We just move on to the next treatment options.

Jim

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@maylily

I'm 79 yo & have numbness in feet & slightly in hands. Have had back issue for yrs. GP referred me to Neurologist but virus halted that. What can I expect when I do go?

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Hello, @maylily

The neurologist will probably ask you to describe the symptoms you're experiencing, and may schedule you for some tests to learn what's causing the symptoms. I think the first test my neurologist did was a nerve conduction study, and the results immediately diagnosed peripheral neuropathy.

I hope you are satisfied with your first visit. Be sure to speak up. Don't let any doctor brush you off because of your age. Are you comfortable with researching things online? There are endless resources. I always go online when I start a new medication or when a doctor mentions something that I'd like to know more about.

I wish you well.

Jim

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@jimhd

Hello, @maylily

The neurologist will probably ask you to describe the symptoms you're experiencing, and may schedule you for some tests to learn what's causing the symptoms. I think the first test my neurologist did was a nerve conduction study, and the results immediately diagnosed peripheral neuropathy.

I hope you are satisfied with your first visit. Be sure to speak up. Don't let any doctor brush you off because of your age. Are you comfortable with researching things online? There are endless resources. I always go online when I start a new medication or when a doctor mentions something that I'd like to know more about.

I wish you well.

Jim

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Thank you

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@jimhd

@fuzzy1southernga

This has been a good forum for me, as well. I've had idiopathic small fiber peripheral polyneuropathy for 7+ years. It was diagnosed in 2013.

Sometimes I prefer to see a doctor alone also. I haven't been able to see the neurologist since February and my next appointment with her was bumped 3 months out. When doctors were seeing patients again I had my appointment moved back several weeks, but since then I've been called twice to change the date. So now it's back to the day they bumped me to, at the end of June. If she weren't such a good doctor I might be looking for a different one. The more they postpone it the worse my pain is.

What areas are affected by neuropathy? Mine started with pins and needles in my feet and legs, then pain was in the balls of my feet, but over the past few months it's spread to include the tops of my feet and ankles, and I feel it moving up my legs. I'm a person who wants to have life organized. That's not possible with neuropathy because every person has their own unique progression. The neurologist can tell us that it is a progressive illness, but they can't predict a prognosis.

You said that the pain is bad at night. Are there other times when it flares up? Every time I lie down my feet jump up to at least 8. Same thing with the recliner. Are there any things that you've found that ease the pain? Have you tried many medications? I hope you will hit upon the right one sooner than later.

I had a Burst DR spinal cord stimulator implant in June of 2015. It was wonderful! I had 80% pain reduction. It continued to be effective for a year. During the second year I had to get the settings adjusted every 3 months. Since the start of 2018, the adjustments have been less and less helpful. I turned it off for the month of March, and then turned it on again, and I could feel no difference. Again, we are each unique in how we respond to the multitude of treatments. For some people, the SCS implant is effective much longer, while others don't find it effective at all. We just move on to the next treatment options.

Jim

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Numbness started in hands about 10 years ago. Had Carpal Tunnl procedure which helped some. The numbnes proceeds with nincreasing numbness moving up to wrists. The numbness is also in my feet and legs making t necessary to use a walker.
Taking vitamin B12. As far as pain; experiece it only occassionally. Thanks for responding

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I started the peripheral nerve stimulator trial using Nalu Med stimulators. So far the stimulators have cut the pain medication in half. Before I could only stand/walk for two minutes. Now I can stand/walk for several minutes. I'm going to the grocery store later today. The trial lasts for one week; until Tuesday June 9th. So far I am impressed.

If I elect to have them installed after the trial, they will be installed inside my lower legs permanently. They never need new batteries.

Peripheral Nerve Stimulator

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@fredjan2016

I started the peripheral nerve stimulator trial using Nalu Med stimulators. So far the stimulators have cut the pain medication in half. Before I could only stand/walk for two minutes. Now I can stand/walk for several minutes. I'm going to the grocery store later today. The trial lasts for one week; until Tuesday June 9th. So far I am impressed.

If I elect to have them installed after the trial, they will be installed inside my lower legs permanently. They never need new batteries.

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@fredjan2016 Could you tell us more about the stimulator you're trying?

Jim

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The stimulator is from Nalu Med, https://nalumed.com/, and it works on the same principles as a spinal cord stimulator. They install the stimulator close to the nerves that are sending the pain signals instead of targeting them in the spinal cord. In my case that would be just above my feet. A few weeks before the trial they did a nerve block on the same nerves the stimulator is targeting. The nerve block was very successful.

As you can see on the website the implanted device is very small. The size of a dime. It comes with a remote control that allows you to change the pre-installed programs and the intensity.

As the picture shows in my previous post, I have stimulators installed on both legs. They installed wires in my leg while I was out and the bandages hold the wires in place for the trial. The black Velcro pouches on each leg hold the stimulator disk that connects to the wire leads. The Nalu representatives spent an hour with me after the doctor implanted the wires setting up the programs and setting the intensity. It was a little painful setting up the intensity, but I don't feel anything now. I don't feel any difference between when the device is on and when it is off.

My idiopathic small fiber peripheral neuropathy is very painful and without pain pills the pain would send me to the ER. I would say my pain is "typical" for this disease. My feet "tell me" they are really hot when they are not, I get shooting stabbing pains, my feet are very sensitive to touch and they can't sense temperature. I can put my feet in scalding water and not feel a thing. Cold water helps my foot pain a lot.

Prior to the stimulator trial I could only stand/walk for two minutes. I couldn't walk into the dollar store, pickup a gallon of milk and stand in line to check out without having to drop down to one knee due to the pain. Today, for the first time in years, I was able to go grocery shopping for an hour. I had mild pain, but not enough to keep me from shopping. As my neurologist told me this disease will only get worse, so I'm not sure how long the stimulator will keep working for me, but it is better than anything else they doctors have tried.

Last evening I did not take any pain medication before I went to bed. I woke up at 3 AM in very bad pain and had to take a pain pill. So, the device hasn't gotten rid of all the pain, and I still take about half of the pain medication I was taking.

If you want, I'll share an update at the end of my trial. Please contact me with any questions you may have.

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@fredjan2016

The stimulator is from Nalu Med, https://nalumed.com/, and it works on the same principles as a spinal cord stimulator. They install the stimulator close to the nerves that are sending the pain signals instead of targeting them in the spinal cord. In my case that would be just above my feet. A few weeks before the trial they did a nerve block on the same nerves the stimulator is targeting. The nerve block was very successful.

As you can see on the website the implanted device is very small. The size of a dime. It comes with a remote control that allows you to change the pre-installed programs and the intensity.

As the picture shows in my previous post, I have stimulators installed on both legs. They installed wires in my leg while I was out and the bandages hold the wires in place for the trial. The black Velcro pouches on each leg hold the stimulator disk that connects to the wire leads. The Nalu representatives spent an hour with me after the doctor implanted the wires setting up the programs and setting the intensity. It was a little painful setting up the intensity, but I don't feel anything now. I don't feel any difference between when the device is on and when it is off.

My idiopathic small fiber peripheral neuropathy is very painful and without pain pills the pain would send me to the ER. I would say my pain is "typical" for this disease. My feet "tell me" they are really hot when they are not, I get shooting stabbing pains, my feet are very sensitive to touch and they can't sense temperature. I can put my feet in scalding water and not feel a thing. Cold water helps my foot pain a lot.

Prior to the stimulator trial I could only stand/walk for two minutes. I couldn't walk into the dollar store, pickup a gallon of milk and stand in line to check out without having to drop down to one knee due to the pain. Today, for the first time in years, I was able to go grocery shopping for an hour. I had mild pain, but not enough to keep me from shopping. As my neurologist told me this disease will only get worse, so I'm not sure how long the stimulator will keep working for me, but it is better than anything else they doctors have tried.

Last evening I did not take any pain medication before I went to bed. I woke up at 3 AM in very bad pain and had to take a pain pill. So, the device hasn't gotten rid of all the pain, and I still take about half of the pain medication I was taking.

If you want, I'll share an update at the end of my trial. Please contact me with any questions you may have.

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@fredjan2016 I see in the physician instructions that the nalumed is not MRI compatible. That was one requirement I had for the SCS implant. The size of the implant and low level invasive surgery are attracted to a lot of people, I'm sure. The SCS implant is quite small, like the size of a small match box. Most people don't really feel the battery implant, but because I'm thin, I can feel it by touch and by lying on it. Mine is just above my belt line. So, the size generally isn't an issue for most people because they have more cushion in that area.

Your symptoms are remarkably similar to mine. I can walk around, but not without pain. Hard surfaces are the worst, and the pain is worse standing still. Lying down or sitting in the recliner with my feet up is an instant elevation of pain. I realized one day that the water in my shower was too hot to hold my hand under it, but I didn't feel it hitting my feet.

The pain is slowly making its way up my legs. Right now it reaches just above mid calf. When I had my appointment with the neurologist 6 months ago, the pain was mostly in the balls of my feet and toes. At my appointment a week ago, the neurologist was concerned that my pain had spread to include the whole foot and ankles and starting up my legs. He prescribed Prednisone, which is supposed to slow the progression of neuropathy. The plan is to take it long term.

I've been taking morphine sulfate contin for more than 5 years, and Imipramine for 8 months. Morphine takes the edge off the pain. A few years ago I tapered off it to see if it was having any effect on the pain. I realized within 2 weeks of being off it, it was indeed helping my pain. So, it could be a lot worse! But clearly, it doesn't do the whole job, and Imipramine has helped. After about 6 months, it began to lose its effectiveness, unfortunately. I have an appointment with the pain specialist Monday, and we'll be having a conversation about what to do next. I've exhausted the long list of neuropathy medications, and all of the pain meds that are available. Imipramine is the next to the last medication on the pain specialist's list, and he told me that the one remaining medication isn't one that he would prescribe because of its side effects.

Do you have any indicators of autonomic neuropathy? That's a whole different set of problems. You said that you have a pain medication. Did you take it very long before starting the trial? Obviously it's not doing the whole job, or you probably wouldn't be looking at other options. I hope that you'll continue to feel the benefit of your implant for a long time.

Gotta go set the table for supper. Do keep us updated through this process.

Jim

Liked by steeldove

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@jimhd
I do not have any signs of autonomic neuropathy. Four people in my family (uncle, brother, sister, me) have peripheral neuropathy and none of them have autonomic neuropathy. Thank God for that.

No medications have helped my neuropathy and the doctors have tried all they could think of. The only thing that has worked is pain pills and I've been on them for four years. Started with Hydrocodone, went to Morphine and now I'm on Methadone. Methadone has the least side effects for me and lasts the longest. The Methadone controlled the pain but I still couldn't stand or walk for more than 2 minutes. So, I was surprised when the nerve block and this trial took care of most of the pain and I could stand and walk for over 30 minutes. (I might have to return my handicap placard.)

The pain management doctors I have had wanted to get me off of opioids, so they pushed some type of neuro stimulator. My old insurance would not cover a spinal cord stimulator but my new insurance would cover it or this localized neuro stimulator. My current pain management doctor said that installing a neuro stimuatlor in the lower leg is new procedure and few doctors are certified to do it.

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@fredjan2016

@jimhd
I do not have any signs of autonomic neuropathy. Four people in my family (uncle, brother, sister, me) have peripheral neuropathy and none of them have autonomic neuropathy. Thank God for that.

No medications have helped my neuropathy and the doctors have tried all they could think of. The only thing that has worked is pain pills and I've been on them for four years. Started with Hydrocodone, went to Morphine and now I'm on Methadone. Methadone has the least side effects for me and lasts the longest. The Methadone controlled the pain but I still couldn't stand or walk for more than 2 minutes. So, I was surprised when the nerve block and this trial took care of most of the pain and I could stand and walk for over 30 minutes. (I might have to return my handicap placard.)

The pain management doctors I have had wanted to get me off of opioids, so they pushed some type of neuro stimulator. My old insurance would not cover a spinal cord stimulator but my new insurance would cover it or this localized neuro stimulator. My current pain management doctor said that installing a neuro stimuatlor in the lower leg is new procedure and few doctors are certified to do it.

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@fredjan2016

Doctors wanting their patients off opioids are stupid. But don't quote me on that. If morphine is so bad, why did they prescribe them for us. How is it that they have treated pain for centuries and now the bureaucracy rewrites history and opioids do nothing for pain. Sorry. The whole thing angers me.

My prescription for morphine was 30mg 3 times a day, when I decided to taper off, then I only went up to 15mg 3 times a day. That was a mistake. Now he announced to me that he won't raise my dose. The PC thing is that my body has gotten used to it and if he raises it once I'll just keep needing more.

So, I've been making myself take only two a day and at the same time getting the prescription filled on time each month. There are days when 2 is definitely not enough. Sometimes I just push through, but sometimes I take 2 at night because I'm in so much pain. You know that feeling, don't you.

If something else stopped the pain, I'd be all over it, and would willingly stop the morphine. But I've tried everything that all of my doctors could offer, and nothing has helped. I shouldn't say "nothing", because Lyrica was beginning to relieve the pain, until I ended up in the ER, incoherent, couldn't walk, no memory. I couldn't live with those reactions just so my feet wouldn't hurt. I've forgotten how to cry. I would be in tears every night and every day.

After I told my doctor (not my current one – I lived in another place) that I was attempting suicide he was considerate and allowed me to make arrangements for others to do my work and I self admitted to a suicide failure facility. The normal stay there was 3 days. I stayed for 6 weeks because I knew that I would do it right the next time, as soon as I got home.

Sorry. You didn't need to hear all that. I retired at 55 on Social Security disability and Medicare became my health insurance, and they approved the SCS implant. There's very little that they have declined. Even then, a letter from the doctor gets things approved.

I wish that I had taken the advice from a man in this forum, to do a lot of research before signing on with the surgeon. As in research about the doctor. He did the procedure fine, but I have never to this day laid eyes on him except in surgery.

Well, I seem to have lived up to my usual record, and written way more than necessary. What's stopping me now is that my dog is pestering me to let her out.

Thanks for listening.

Jim

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@fredjan2016

I started the peripheral nerve stimulator trial using Nalu Med stimulators. So far the stimulators have cut the pain medication in half. Before I could only stand/walk for two minutes. Now I can stand/walk for several minutes. I'm going to the grocery store later today. The trial lasts for one week; until Tuesday June 9th. So far I am impressed.

If I elect to have them installed after the trial, they will be installed inside my lower legs permanently. They never need new batteries.

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Hi @fredjan2016 my wife has the PN in our family. I am wondering how your doctor decided to go with the particular stimulation method you are getting? So far I know of the spinal cord stimulation (SCS) and the dorsal root ganglion (DRG) stimulation and this is the first I've heard of this peripheral neurostimulator. Does he think this makes the most sense because the pain is originating in the peripheral nerves instead of more centrally located pain such as lower back pain, etc.? That would seem to make sense intuitively. Have you heard of anyone else already having success with this method for SFN? I wish you good luck on this, it will be great to hear that you have had success in improving your pain situation. Best, Hank

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