1. < Neuropathy
Mentor

Member Neuropathy Journey Stories: What's Yours?

Posted by John, Volunteer Mentor @johnbishop, May 12, 2020

This discussion was created as a place for members to share their journey with neuropathy. This will allow members to easily learn from each other what has helped them and hopefully help new members avoid some of the painful and difficult struggles some of us have faced. The following is a suggested outline for sharing your story that would be helpful for other members for comparison to their own neuropathy story.

— When did your neuropathy start? What were the symptoms? When and how was it diagnosed?
— What treatments or medications have you tried?
— What side effects have you had, if any?

Optional:
— What would you tell your best friend if they told you they had neuropathy?
— What activities have you had to give up because of neuropathy? What do you instead?
— How has your life changed socially? at work? at home?

What's your neuropathy story?

Note: If you want to ask a question for another member who has posted their neuropathy story here in this discussion, be sure to add their @membername in your post, for example @johnbishop. Your question may already be discussed in other neuropathy discussions. Be sure to check here first: https://connect.mayoclinic.org/group/neuropathy/ That way this discussion can be reserved for member neuropathy stories and hopefully make it easier to read and find similar symptoms to your own.

Interested in more discussions like this? Go to the Neuropathy Support Group.

bethunger | @bethunger | Jan 25, 2021

2005 I was riding my bike every afternoon. Taking the same turns I always do, I like predictability. I dealt with very intense days, like most people do. I worked with people to help them improve their parenting skills. As part of a team assigned to decide whether a parent received their custody rights returned, it could be difficult. At other times it was tremendously rewarding. So, to come home, change, and hop on my bike, was my time to decompress. I rode for a half hour or so and came back home. I visited with my son, who I enjoy immensely. He just graduated from high school. My goal was to ensure that he could cook, at least a little bit, so that he did not choose fast foods every day while in college. I felt the time I had with him slipping away faster and faster like that fun house wheel one sat on until you swung off-totally out of control. These little lessons that I had to talk him into were a great excuse to be just the two of us, like we had often been while he grew up.

The next morning, I woke with extreme burning and numbness in my feet. I thought I just slept pinching them both somehow. It went away soon enough and it left my mind just as quickly. That same sensatioon showed up in the evening eventually robbing me of my sleep.

My favorite Uncle asked if we could go to California and pay him a visit. He was in his late 80's and I never wanted to miss a chance to see him. Planning the trip, getting my husband's and my own vacation time coordinated took up any other issues in my head and spare time. I tripped leaving for work that day, tore my panty hose and bloodied both knees. I dusted myself off, and found I struggled to right myself. I put that off to general rushing about, looked around to see if anyone in the neighborhood had video taped that blooper, changed my clothes and arrived late to a meeting.

The next night the pain/numbness/tingling sensation came and never left. It got progressively worse. Now it is 2021! I am unable to walk for more than 10-20 minuets at a time. I still have my lovely bike as I cannot come to donating it. I hope I will be the miracle patient that has had my balance, pain, and numbness cured somehow. So that I could ride again. I am not being sarcastic so please don't take offense. I truly hope for that miracle.

I have had two pain pump implant surgeries. My lovely son paid for me to receive acupuncture treatments. I did them for 2 years. I now sleep with a C-Pap full face mask because I stop breathing for way too long, at night. I still fall on occasion, so I use a cane when going on my short walks, but due to dry mouth,( side effect from medication) I must bring a drink on those little walks. I still struggle with balance issues. I am sure the neighbors think I drink, something stronger than soda!.

I had to have emergency eye surgery to fix a dislocation that a seizure fall caused. I had two large seizures when I was in the 8th grade. I was treated for epilepsy for 4 years and only had some insignificant, very small seizures until I started the neuropathy roller coaster, like a bad version of batman, WHAM seizures started up only much worse this time around. I now have only a I.D.-no driving for me, understandably. My husband is the one who suffers the most, I think. He has taken over most of the chores, as I am just too weak or tired. He does so without any complaint, but the look of deep sadness is on his face as soon as he sees me when he arrives home, it is brutal.

My dream job went to part-time, then 15 hours a week, then gone. Instead of interesting, challenging conversations with colleagues; I have in depth discussions with my dog about which type of treat he would like at the time. I am on a medication regime that I manage with my wonderful husbands help. Did I mention, I no longer drive.

When my brother was in a coma after being hit by a drunk driver, one of the nurses said," it has to be looked at as before the accident and after the accident. All progress must be put into that perspective". So, I try to look that way at my life, before and after. I try to contribute in our life with good conversations, occasional cooking/cleaning up. My brother made mostly a full recovery. Emotionally, his fiancé was killed, so his life was very difficult for a long time. After many years, he met his new wife and started life anew.

My son comes by when he can. I think it is mostly to help my husband cope. They go fishing so they can get away from me and my diseases. I do not take that personally. I wish I could climb right out of this body and get the h/@** away from it too. My husband tends to fuss around me like a Grandmother might do. So, the face mask, the lovely dry, splitting skin that I must bandage each night all tend to put the brakes on my "come hither look". That part of our life must take more creativity than previously. I will leave that there.

Oh, some friends slowly stopped coming by. However, I remain connected with a couple of great women and they are a respite for me. Though at times, they talk about the life I lost and their stories of how things are for them. They do not know how my heart feels thin, like fragile pieces of glass that stab me as I smile listening to them plan for their retirement parties.

Thanks for giving me the chance to write honestly about this awful disease.

REPLY
2 replies
Hank | @jesfactsmon | Jan 26, 2021
In reply to @bethunger "2005 I was riding my bike every afternoon. Taking the same turns I always do, I..." + (show)
@bethunger

2005 I was riding my bike every afternoon. Taking the same turns I always do, I like predictability. I dealt with very intense days, like most people do. I worked with people to help them improve their parenting skills. As part of a team assigned to decide whether a parent received their custody rights returned, it could be difficult. At other times it was tremendously rewarding. So, to come home, change, and hop on my bike, was my time to decompress. I rode for a half hour or so and came back home. I visited with my son, who I enjoy immensely. He just graduated from high school. My goal was to ensure that he could cook, at least a little bit, so that he did not choose fast foods every day while in college. I felt the time I had with him slipping away faster and faster like that fun house wheel one sat on until you swung off-totally out of control. These little lessons that I had to talk him into were a great excuse to be just the two of us, like we had often been while he grew up.

The next morning, I woke with extreme burning and numbness in my feet. I thought I just slept pinching them both somehow. It went away soon enough and it left my mind just as quickly. That same sensatioon showed up in the evening eventually robbing me of my sleep.

My favorite Uncle asked if we could go to California and pay him a visit. He was in his late 80's and I never wanted to miss a chance to see him. Planning the trip, getting my husband's and my own vacation time coordinated took up any other issues in my head and spare time. I tripped leaving for work that day, tore my panty hose and bloodied both knees. I dusted myself off, and found I struggled to right myself. I put that off to general rushing about, looked around to see if anyone in the neighborhood had video taped that blooper, changed my clothes and arrived late to a meeting.

The next night the pain/numbness/tingling sensation came and never left. It got progressively worse. Now it is 2021! I am unable to walk for more than 10-20 minuets at a time. I still have my lovely bike as I cannot come to donating it. I hope I will be the miracle patient that has had my balance, pain, and numbness cured somehow. So that I could ride again. I am not being sarcastic so please don't take offense. I truly hope for that miracle.

I have had two pain pump implant surgeries. My lovely son paid for me to receive acupuncture treatments. I did them for 2 years. I now sleep with a C-Pap full face mask because I stop breathing for way too long, at night. I still fall on occasion, so I use a cane when going on my short walks, but due to dry mouth,( side effect from medication) I must bring a drink on those little walks. I still struggle with balance issues. I am sure the neighbors think I drink, something stronger than soda!.

I had to have emergency eye surgery to fix a dislocation that a seizure fall caused. I had two large seizures when I was in the 8th grade. I was treated for epilepsy for 4 years and only had some insignificant, very small seizures until I started the neuropathy roller coaster, like a bad version of batman, WHAM seizures started up only much worse this time around. I now have only a I.D.-no driving for me, understandably. My husband is the one who suffers the most, I think. He has taken over most of the chores, as I am just too weak or tired. He does so without any complaint, but the look of deep sadness is on his face as soon as he sees me when he arrives home, it is brutal.

My dream job went to part-time, then 15 hours a week, then gone. Instead of interesting, challenging conversations with colleagues; I have in depth discussions with my dog about which type of treat he would like at the time. I am on a medication regime that I manage with my wonderful husbands help. Did I mention, I no longer drive.

When my brother was in a coma after being hit by a drunk driver, one of the nurses said," it has to be looked at as before the accident and after the accident. All progress must be put into that perspective". So, I try to look that way at my life, before and after. I try to contribute in our life with good conversations, occasional cooking/cleaning up. My brother made mostly a full recovery. Emotionally, his fiancé was killed, so his life was very difficult for a long time. After many years, he met his new wife and started life anew.

My son comes by when he can. I think it is mostly to help my husband cope. They go fishing so they can get away from me and my diseases. I do not take that personally. I wish I could climb right out of this body and get the h/@** away from it too. My husband tends to fuss around me like a Grandmother might do. So, the face mask, the lovely dry, splitting skin that I must bandage each night all tend to put the brakes on my "come hither look". That part of our life must take more creativity than previously. I will leave that there.

Oh, some friends slowly stopped coming by. However, I remain connected with a couple of great women and they are a respite for me. Though at times, they talk about the life I lost and their stories of how things are for them. They do not know how my heart feels thin, like fragile pieces of glass that stab me as I smile listening to them plan for their retirement parties.

Thanks for giving me the chance to write honestly about this awful disease.

Jump to this post

@bethunger
Beth, you certainly convey a wistful melancholy that has accompanied your journey. You feel you have lost much to this illness. You no longer can take your bike rides, do things you'd like to do with your husband and son or enjoy the work you used to be able to do, helping others with their parenting skills. You have, I think, eloquently captured the essence of what neuropathy does to a person's life. It changes everything, often relatively quickly (much like covid has changed the world in such unexpected and dramatic fashion).

As far as your pain, how well does the pain pump help? Are you still able to enjoy life to some extent, or does pain now rule your life? You talk about "before and after". It can make us sad to remember all that we once had in life but do no longer. The best thing (if the pain is not dominating everything) is to take joy from new or different things. Whatever can keep your spirits up, that is the key. Have you been able to find such things? I appreciate your story, thank-you for sharing it. Best, Hank

REPLY
2 replies
fiesty76 | @fiesty76 | Jan 26, 2021
In reply to @bethunger "2005 I was riding my bike every afternoon. Taking the same turns I always do, I..." + (show)
@bethunger

2005 I was riding my bike every afternoon. Taking the same turns I always do, I like predictability. I dealt with very intense days, like most people do. I worked with people to help them improve their parenting skills. As part of a team assigned to decide whether a parent received their custody rights returned, it could be difficult. At other times it was tremendously rewarding. So, to come home, change, and hop on my bike, was my time to decompress. I rode for a half hour or so and came back home. I visited with my son, who I enjoy immensely. He just graduated from high school. My goal was to ensure that he could cook, at least a little bit, so that he did not choose fast foods every day while in college. I felt the time I had with him slipping away faster and faster like that fun house wheel one sat on until you swung off-totally out of control. These little lessons that I had to talk him into were a great excuse to be just the two of us, like we had often been while he grew up.

The next morning, I woke with extreme burning and numbness in my feet. I thought I just slept pinching them both somehow. It went away soon enough and it left my mind just as quickly. That same sensatioon showed up in the evening eventually robbing me of my sleep.

My favorite Uncle asked if we could go to California and pay him a visit. He was in his late 80's and I never wanted to miss a chance to see him. Planning the trip, getting my husband's and my own vacation time coordinated took up any other issues in my head and spare time. I tripped leaving for work that day, tore my panty hose and bloodied both knees. I dusted myself off, and found I struggled to right myself. I put that off to general rushing about, looked around to see if anyone in the neighborhood had video taped that blooper, changed my clothes and arrived late to a meeting.

The next night the pain/numbness/tingling sensation came and never left. It got progressively worse. Now it is 2021! I am unable to walk for more than 10-20 minuets at a time. I still have my lovely bike as I cannot come to donating it. I hope I will be the miracle patient that has had my balance, pain, and numbness cured somehow. So that I could ride again. I am not being sarcastic so please don't take offense. I truly hope for that miracle.

I have had two pain pump implant surgeries. My lovely son paid for me to receive acupuncture treatments. I did them for 2 years. I now sleep with a C-Pap full face mask because I stop breathing for way too long, at night. I still fall on occasion, so I use a cane when going on my short walks, but due to dry mouth,( side effect from medication) I must bring a drink on those little walks. I still struggle with balance issues. I am sure the neighbors think I drink, something stronger than soda!.

I had to have emergency eye surgery to fix a dislocation that a seizure fall caused. I had two large seizures when I was in the 8th grade. I was treated for epilepsy for 4 years and only had some insignificant, very small seizures until I started the neuropathy roller coaster, like a bad version of batman, WHAM seizures started up only much worse this time around. I now have only a I.D.-no driving for me, understandably. My husband is the one who suffers the most, I think. He has taken over most of the chores, as I am just too weak or tired. He does so without any complaint, but the look of deep sadness is on his face as soon as he sees me when he arrives home, it is brutal.

My dream job went to part-time, then 15 hours a week, then gone. Instead of interesting, challenging conversations with colleagues; I have in depth discussions with my dog about which type of treat he would like at the time. I am on a medication regime that I manage with my wonderful husbands help. Did I mention, I no longer drive.

When my brother was in a coma after being hit by a drunk driver, one of the nurses said," it has to be looked at as before the accident and after the accident. All progress must be put into that perspective". So, I try to look that way at my life, before and after. I try to contribute in our life with good conversations, occasional cooking/cleaning up. My brother made mostly a full recovery. Emotionally, his fiancé was killed, so his life was very difficult for a long time. After many years, he met his new wife and started life anew.

My son comes by when he can. I think it is mostly to help my husband cope. They go fishing so they can get away from me and my diseases. I do not take that personally. I wish I could climb right out of this body and get the h/@** away from it too. My husband tends to fuss around me like a Grandmother might do. So, the face mask, the lovely dry, splitting skin that I must bandage each night all tend to put the brakes on my "come hither look". That part of our life must take more creativity than previously. I will leave that there.

Oh, some friends slowly stopped coming by. However, I remain connected with a couple of great women and they are a respite for me. Though at times, they talk about the life I lost and their stories of how things are for them. They do not know how my heart feels thin, like fragile pieces of glass that stab me as I smile listening to them plan for their retirement parties.

Thanks for giving me the chance to write honestly about this awful disease.

Jump to this post

@bethunger, What a moving experience you shared eloquently! Thank you for describing what life is like for not only the patient with life changing maladies but also for the impact on loved ones and close friends.

So glad you have the support of a loving husband and child, the unconditional love of a little 4-legger who lets you know his choice of treat...how truly drear our lives would be without our pets!...and the support and respite you find in loyal friends.

As a past primary caregiver to family and best friend to my emotional rudder for many years who passed away this spring, I can attest to the hardships and challenges a loved one faces when feeling helpless to bring healing to one we love.

Wishing you the very best life possible going forward, Bet, and thank you for your post.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jan 26, 2021
In reply to @sunnyflower "Hey there John, how are you doing? I didn't see this message when I replied sharing..." + (show)
@sunnyflower

Hey there John, how are you doing? I didn't see this message when I replied sharing my experience w/ Tramadol. These two statements here are contradictory yes? Warmest and best wishes, Sunny

Jump to this post

@sunnyflower, the two statements did seem a little contradictory to me also but both valid and from good sources.

REPLY
fiesty76 | @fiesty76 | Jan 26, 2021
In reply to @jesfactsmon "@bethunger Beth, you certainly convey a wistful melancholy that has accompanied your journey. You feel you..." + (show)
@jesfactsmon

@bethunger
Beth, you certainly convey a wistful melancholy that has accompanied your journey. You feel you have lost much to this illness. You no longer can take your bike rides, do things you'd like to do with your husband and son or enjoy the work you used to be able to do, helping others with their parenting skills. You have, I think, eloquently captured the essence of what neuropathy does to a person's life. It changes everything, often relatively quickly (much like covid has changed the world in such unexpected and dramatic fashion).

As far as your pain, how well does the pain pump help? Are you still able to enjoy life to some extent, or does pain now rule your life? You talk about "before and after". It can make us sad to remember all that we once had in life but do no longer. The best thing (if the pain is not dominating everything) is to take joy from new or different things. Whatever can keep your spirits up, that is the key. Have you been able to find such things? I appreciate your story, thank-you for sharing it. Best, Hank

Jump to this post

@jestfactsmon, Glad to hear from you and sending thanks for your response to Bet. I think one of the challenges of aging, not to mention chronic health issues, is learning to accept and adapt as graciously as possible to life changes we have to make in the "now". Not an easy task to be sure but so agree that looking for the bright spots that make a day go better is well worth the focus in life altering circumstances.

REPLY
ga29 | @ga29 | Jan 26, 2021
In reply to @sunnyflower "Hello notborntoburn, first of all I love your Mayo name! I am very heavy hearted to..." + (show)
@sunnyflower

Hello notborntoburn, first of all I love your Mayo name! I am very heavy hearted to hear about your pain. I was put on Tramadol back in the day. My understanding is (which could be wrong) that it is an opiate with an epinephrine in it. The thinking was that the epi would keep patients from getting high while on the Tramadol. It made me clench my teeth and have insomnia. I think it may have helped my pain somewhat but very minimally. I can't recall the dose I was on but don't think it was as much as you are on. Today 2 of my doctors met and increased my Morphine. I about fainted! I didn't ask for that and in fact had tapered myself down a lot over the past couple of years. That and the Gabapentin has helped my tolerate my pain but I have almost all the unwanted side-effects of Gabapentin so I'm thinking that I may be able to decrease my dose when I begin my new Morphine regime on Wednesday. I believe there was Divine intervention for these two docs to talk and have this compassion. I'm stunned! I don't like to feel any drug so don't know if I will take the extra mg. but we'll see. I definitely won't take it if I don't need it. I hope you can find just the right doctor. It's so hard now b/c there is opiophobia out there now and patients are receiving substandard care. You practically have to have cancer for a doctor to validate your pain and be willing to prescribe opiate pain medicine. You build up a tolerance after being on meds like this which isn't something you want either. I will pray that you find just the right doctor for you and your needs. And that your pain goes away!!!!!!!! Take care, many blessings, Sunnyflower

Jump to this post

Thanks sunny flower, I didn’t know that. They tried tramadol on me many years ago and I did not like it the way it made me feel. I think there’s an extended release version they tried also - made me feel like Alice in wonderland through the looking glass down the tunnel kind of feeling. I cannot take epinephrine (Sudafed?) - I remember that from years ago, when they gave it for allergies otc . It made me feel like I had something crawling on me. So maybe that has something to do with my dislike of tramadol. I am taking morphine and Lyrica now for my back and what I thought was neuropathy. I just had lumbar fusion surgery and my neuropathy symptoms seem to have disappeared! Thank you Mayo, for the testing done before hand.

REPLY
1 reply
avmcbellar | @avmcbellar | Jan 26, 2021
In reply to @sunnyflower "Oh my gracious!!! I'm going to save this b/c I have to read it again. It..." + (show)
@sunnyflower

Oh my gracious!!! I'm going to save this b/c I have to read it again. It sounds like good logic/rationale! Interesting! Good on you for doing the testing! Thanks for sharing!!! Many blessings, Sunnyflower

Jump to this post

Hi @sunnyflower it is only a theory. I felt the burning pain more so in the colder climate. I am heat sensitive so the cooler temperatures are more comforting to me. I didn’t realize sustained cold temperatures would cause more burning pain in my lower leg. I am more careful now knowing that especially for the winter Florida months. Luckily it doesn’t get extremely cold here. In fact in the last couple of days the temperatures here have risen to near 80. With that said, both my feet felt too warm. I had to remove my socks to be comfortable. I did notice by touch my neuropathy foot felt cooler although it seemed burning. The lower limb with the neuropathy will always have a cooler feeling to the normal limb no matter the surrounding temperature. I have noticed the burning pain more so with cold temperatures and warm temperatures. In between seemed better for my neuropathy.

REPLY
ea1 | @ea1 | Jan 26, 2021

Hi John

I am new with Connect and looking for your advise and group members experience.
1. I first felt numbness in my left foot pinky in late 2018/early 2019
2. I felt strange when having my shoe on - feels like pressure on the entire feet but no pain. The pressure is relieved when the shoe is taken off
3. I have back pains in lumber area at the same time and thought that it was related and visited a Neuro surgeon who looked at my MRI and informed me that no nerve is under pressure although my entire spine has mild to moderate issues. I visited him again few weeks ago with new MRI and heard the same.
4. My GP sent me to a vascular surgeon due to my father history with PAD and leg imputations (non diabetic). I went through detailed lower extremity Arterial Duplex Examination twice to date: mild PAD in the right foot. Will go again for retest in December.
5. My GP sent me to a Neurologist who performed EMG/NCR with resulting indicating no Neuropathy, demyelination neuropathy, lumber plexopathy, radioculpathy or myopathy. He still think that I most likely have peripheral neuropathy or maybe SFN.
6. The present neurologist (my first one ever) isn’t not interested in getting the accurate diagnosis and claims that it is progressive which even neuropathy it is.
7. My present symptoms : After about 2 years since I first felt the numbness in my left foot, I now feel numbness in my right foot toe and part of button feet.
Both feet now have numbness but no pain to date. In the evenings, I feel coldness below the knees when seating down. Not sure if it is related or not.
8. I decided to schedule an appointment with a Neuromuscular specialist but Mayo in FL will not accept any new patients with Neuropathy leading me to another regional specialist.

I have few questions with more to come:
1. Does my symptoms match Neuropathy and/or SFN?
2. What medication would you recommend to eliminate the numbness in my feet?

Thanks

Eitan

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jan 26, 2021
In reply to @ea1 "Hi John I am new with Connect and looking for your advise and group members experience...." + (show)
@ea1

Hi John

I am new with Connect and looking for your advise and group members experience.
1. I first felt numbness in my left foot pinky in late 2018/early 2019
2. I felt strange when having my shoe on - feels like pressure on the entire feet but no pain. The pressure is relieved when the shoe is taken off
3. I have back pains in lumber area at the same time and thought that it was related and visited a Neuro surgeon who looked at my MRI and informed me that no nerve is under pressure although my entire spine has mild to moderate issues. I visited him again few weeks ago with new MRI and heard the same.
4. My GP sent me to a vascular surgeon due to my father history with PAD and leg imputations (non diabetic). I went through detailed lower extremity Arterial Duplex Examination twice to date: mild PAD in the right foot. Will go again for retest in December.
5. My GP sent me to a Neurologist who performed EMG/NCR with resulting indicating no Neuropathy, demyelination neuropathy, lumber plexopathy, radioculpathy or myopathy. He still think that I most likely have peripheral neuropathy or maybe SFN.
6. The present neurologist (my first one ever) isn’t not interested in getting the accurate diagnosis and claims that it is progressive which even neuropathy it is.
7. My present symptoms : After about 2 years since I first felt the numbness in my left foot, I now feel numbness in my right foot toe and part of button feet.
Both feet now have numbness but no pain to date. In the evenings, I feel coldness below the knees when seating down. Not sure if it is related or not.
8. I decided to schedule an appointment with a Neuromuscular specialist but Mayo in FL will not accept any new patients with Neuropathy leading me to another regional specialist.

I have few questions with more to come:
1. Does my symptoms match Neuropathy and/or SFN?
2. What medication would you recommend to eliminate the numbness in my feet?

Thanks

Eitan

Jump to this post

Hello Eitan @ea1, Welcome to Mayo Clinic Connect. Thank you for sharing your experience with neuropathy. You almost sound like me over 20+ years ago. Very similar story. When I first felt the numbness in my toes I didn't think much about it. Then when it went into the feet more I talked with my primary care doctor and he surmised it was nerve damage and said they could test for it. When I asked if you test for it and it turns out I have nerve damage, what can you do. When he said nothing I made the decision not to have the tests. Then in 2016 when the numbness was just below my knees I decided I needed to know. The neurologist scheduled some lab tests including an MRI, nerve conduction test and a physical exam. I was diagnosed with idiopathic small fiber peripheral neuropathy but unlike most people diagnosed with neuropathy I only had the numbness and no associated pain. I was disappointed that there was no treatment available even though I had a diagnosis but that is pretty much what my first doctor had told me 20+ years ago. You can read the rest of my story and what has helped me some at the beginning of this discussion if you scroll to the top and click the First button below the discussion description.

Since it seems you have the numbness only symptoms with your neuropathy like mine you may be interested in another discussion on Connect where others have shared about numbness only symptoms -- Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/

None of us here on Connect can give medical advice since we are not doctors. I do think the symptoms you have described sound like mine and I was diagnosed with idiopathic small fiber PN. Your second question as to what I would recommend to eliminate the numbness is the proverbial 64 thousand dollar question. There are no drugs that will help and I've tried about every topical on the market with zero success to eliminate the numbness. I do think the the protocol 525 supplement I have been taking since 2016 has slowed and possibly stopped the progression of my neuropathy which now feels like it's just above the ankles and not just below the knees when I started taking it but that is really subjective on my part.

I think you are on the right track in learning as much as you can about your condition and becoming a better advocate for your health. It may not help with the numbness but I would recommend keeping the skin on your feet and legs hydrated/moisturized with a good lotion since the peripheral nerves are near the skin.

You mentioned you are planning to setup an appointment with another specialist. You might want to make a list of any questions you have so that you can discuss them at the appointment. Can you let us know how it goes?

REPLY
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Jan 26, 2021
In reply to @ea1 "Hi John I am new with Connect and looking for your advise and group members experience...." + (show)
@ea1

Hi John

I am new with Connect and looking for your advise and group members experience.
1. I first felt numbness in my left foot pinky in late 2018/early 2019
2. I felt strange when having my shoe on - feels like pressure on the entire feet but no pain. The pressure is relieved when the shoe is taken off
3. I have back pains in lumber area at the same time and thought that it was related and visited a Neuro surgeon who looked at my MRI and informed me that no nerve is under pressure although my entire spine has mild to moderate issues. I visited him again few weeks ago with new MRI and heard the same.
4. My GP sent me to a vascular surgeon due to my father history with PAD and leg imputations (non diabetic). I went through detailed lower extremity Arterial Duplex Examination twice to date: mild PAD in the right foot. Will go again for retest in December.
5. My GP sent me to a Neurologist who performed EMG/NCR with resulting indicating no Neuropathy, demyelination neuropathy, lumber plexopathy, radioculpathy or myopathy. He still think that I most likely have peripheral neuropathy or maybe SFN.
6. The present neurologist (my first one ever) isn’t not interested in getting the accurate diagnosis and claims that it is progressive which even neuropathy it is.
7. My present symptoms : After about 2 years since I first felt the numbness in my left foot, I now feel numbness in my right foot toe and part of button feet.
Both feet now have numbness but no pain to date. In the evenings, I feel coldness below the knees when seating down. Not sure if it is related or not.
8. I decided to schedule an appointment with a Neuromuscular specialist but Mayo in FL will not accept any new patients with Neuropathy leading me to another regional specialist.

I have few questions with more to come:
1. Does my symptoms match Neuropathy and/or SFN?
2. What medication would you recommend to eliminate the numbness in my feet?

Thanks

Eitan

Jump to this post

Good afternoon @ean. Thanks for joining us as we pursue solutions for the symptoms of neuropathy. What you need is a friend like John who has tried it all, evaluated it even more, and has a gentle way of introducing you to options and treatments. I have SFN, small fiber neuropathy and have been walking down the path with John for about four years. Generally, our symptoms are similar and we share treatment ideas and experiences.

The only kind of unfair item is that John has no pain. Maybe that is because I have enough for both of us. I offered to trade him one day but he didn't like my offer.......1 day of my pain for 2 days of his numbness. No go!

You see, we all suffer, we all attempt to structure a somewhat pleasant life. We research, we learn, we listen and then we give it a try. Sometimes we share the results, sometimes we are both in different SFN realms. If you do want to verify that you have SFN, you can ask your specialist for a skin biopsy test. Not difficult, no pain, and pretty specific results. At least that is a place to start.

May you be safe and protected.
Chirs

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.