I have peripheral neuropathy which began two years ago with a cancer diagnosis of multiple myeloma. It also happened to be a side effect of one of the treatments. I had seven falls in nine months. The first two resulted in collapsed L3 and L4 disks. So I now use a walker.
Thankfully one of the treatments to improve bone density from this particular cancer is a drug called Zometa. It has been very helpful.
@cit10jetjockey
Hi I’ve been dealing with Peripheral Neuropathy for years. Glad to hear you’re pain free! I have numbness and tingling all over and weakness also. I can’t take Lyrica or Gabapentin. I get bad reactions. I eat well and try to keep moving but it’s hard sometimes. What’s your secret for being pain free?
@punkie1214 I have no idea why I’m pain free or does the Medical Profession. There are miles of nerves in our body and they do what they want. I still have all the other issues, weakness, balance and walking. My left leg is weaker than the right. I had to retire from a great job because of my left leg. I couldn’t get the left brake down hard enough and when you’re landing on a 6000ft runway at 120 knots you have to get it stopped. “Sigh”
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?
@punkie1214 I have no idea why I’m pain free or does the Medical Profession. There are miles of nerves in our body and they do what they want. I still have all the other issues, weakness, balance and walking. My left leg is weaker than the right. I had to retire from a great job because of my left leg. I couldn’t get the left brake down hard enough and when you’re landing on a 6000ft runway at 120 knots you have to get it stopped. “Sigh”
@cit10jetjockey
Did you have an emg or nerve conduction study to rule out or in Large Fibre?
“ Long fiber neuropathy (also known as large fiber neuropathy) without pain is often described as the "numb and unsteady" type of peripheral neuropathy. While many neuropathies involve burning or stinging, damage to the large, myelinated sensory nerve fibers leads primarily to a loss of sensation, poor balance, and weakness rather than pain”
Tis what I have and why I cringe when people say congrats on no pain or lucky to not have pain! Its actually not a good thing as its part of the reason for bad balance, ataxic gait and possible loss of mobility.
I always wandered why I didnt have the pain others described (did have uncomfortable sensations) as I was originally told I had just neuropathy. A year later I was retested and it was confirmed as large fibre sensory motor neuropathy. I found the original test report online and that was the original diagnosis but again it was never explained to me. My stomache dropped when I googled what this meant as originally I thought I would have to learn to accept pain.
Anyhows I wander if that is the same reason you are not feeling pain? I also wander why the doctors are still useless even now that I know my exact diagnosis.
Sorry for lengthy message but this disease has effed my head up cognitively as well.
Oh my left leg is also weaker than the right. This disease is bullshit man
@njed when you say no pain do you mean numbness? I find the numbness to be as terrible as pain. Foot feels dead, cold and due to not feeling I cant tell if something is broken. Due to it being sensory and motor I have hammertoes, my arches are super high and dont touch the ground causing ankle problems so I too have an AFO. No doctor told me these deformities could happen which I googled once I noticed them. I hate this disease and how the neurologist I see downplays and makes it seem like its not serious. Id trade the deformities for pain as at least there is possible treatments for it. From what I have read no pain is either a further progressiom or long fibre (I have that) which results in the mobility issues. I think no pain is actually the devil in disguise, nay not a blessing
@megidigo Correct, I have no pain. Now 11 years into this, I mostly have numbness from shins to toes, a feeling of tight socks, poor balance and for the most part walk with a cane. I have axonal sensory motor PN, no autonomic features as of a few years back. I have bilateral drop foot. The fact you have hammertoes and high arches, did the doctor do a test for Charcot-Marie-Tooth? I went to a neuro doc and told him my grandmother had hammer toes, and he ordered a CMT test, came back negative. What a complicated mess.
@megidigo Correct, I have no pain. Now 11 years into this, I mostly have numbness from shins to toes, a feeling of tight socks, poor balance and for the most part walk with a cane. I have axonal sensory motor PN, no autonomic features as of a few years back. I have bilateral drop foot. The fact you have hammertoes and high arches, did the doctor do a test for Charcot-Marie-Tooth? I went to a neuro doc and told him my grandmother had hammer toes, and he ordered a CMT test, came back negative. What a complicated mess.
@njed I have wandered about CMT but when I mentioned the toes and arches the neurologist didnt say much other than its the motor nerves causing it.
I noticed one day in the mirror my arch wasnt flattening / retracting. I put the bad balance down due to neuropathy but its the high arches causing me to walk on the outside of me feet. Its an annoying uncomfortable feeling.
I guess its not CMT as no one else in my family has CMT and I believe its hereditary? I might as well have it though since the symptoms are the same including muscle wasting. Mine is axonal as well.
Has anything helped you at all in the 11 years?
@cit10jetjockey
Did you have an emg or nerve conduction study to rule out or in Large Fibre?
“ Long fiber neuropathy (also known as large fiber neuropathy) without pain is often described as the "numb and unsteady" type of peripheral neuropathy. While many neuropathies involve burning or stinging, damage to the large, myelinated sensory nerve fibers leads primarily to a loss of sensation, poor balance, and weakness rather than pain”
Tis what I have and why I cringe when people say congrats on no pain or lucky to not have pain! Its actually not a good thing as its part of the reason for bad balance, ataxic gait and possible loss of mobility.
I always wandered why I didnt have the pain others described (did have uncomfortable sensations) as I was originally told I had just neuropathy. A year later I was retested and it was confirmed as large fibre sensory motor neuropathy. I found the original test report online and that was the original diagnosis but again it was never explained to me. My stomache dropped when I googled what this meant as originally I thought I would have to learn to accept pain.
Anyhows I wander if that is the same reason you are not feeling pain? I also wander why the doctors are still useless even now that I know my exact diagnosis.
Sorry for lengthy message but this disease has effed my head up cognitively as well.
Oh my left leg is also weaker than the right. This disease is bullshit man
@megidigo I’ve had several exams over the years and I can’t recall what they were. Most Dr’s just say that I have PN and try not to fall. I’m 86 now so I just deal with it. My life hasn’t changed much other than hanging up my wings in 2006. I can still drive and shop with my wife. There will never be a cure for PN, I’m just lucky to be pain free. I know that working out at Planet fitness helps a lot. I’m there 5 days a week. I do leg and calf exercises along with others.
Semper Fi
@njed I have wandered about CMT but when I mentioned the toes and arches the neurologist didnt say much other than its the motor nerves causing it.
I noticed one day in the mirror my arch wasnt flattening / retracting. I put the bad balance down due to neuropathy but its the high arches causing me to walk on the outside of me feet. Its an annoying uncomfortable feeling.
I guess its not CMT as no one else in my family has CMT and I believe its hereditary? I might as well have it though since the symptoms are the same including muscle wasting. Mine is axonal as well.
Has anything helped you at all in the 11 years?
@megidigo Anything helped me? Short answer, no. But...I know this is a progressive situation and I try to keep active and keep moving as much as I can. Walking is important. Even short distances and often. I feel by keeping active, it may not stop progression but may slow it down. I've often posted on this site to look at what you can do and NOT what you can't do. Wish you the best! Ed
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I have peripheral neuropathy which began two years ago with a cancer diagnosis of multiple myeloma. It also happened to be a side effect of one of the treatments. I had seven falls in nine months. The first two resulted in collapsed L3 and L4 disks. So I now use a walker.
Thankfully one of the treatments to improve bone density from this particular cancer is a drug called Zometa. It has been very helpful.
@punkie1214 I have no idea why I’m pain free or does the Medical Profession. There are miles of nerves in our body and they do what they want. I still have all the other issues, weakness, balance and walking. My left leg is weaker than the right. I had to retire from a great job because of my left leg. I couldn’t get the left brake down hard enough and when you’re landing on a 6000ft runway at 120 knots you have to get it stopped. “Sigh”
@aliskahan I have neuropathy due to chemo treatments for breast cancer. It started 4 months ago and I find it to be very distasteful!
@cit10jetjockey
Did you have an emg or nerve conduction study to rule out or in Large Fibre?
“ Long fiber neuropathy (also known as large fiber neuropathy) without pain is often described as the "numb and unsteady" type of peripheral neuropathy. While many neuropathies involve burning or stinging, damage to the large, myelinated sensory nerve fibers leads primarily to a loss of sensation, poor balance, and weakness rather than pain”
Tis what I have and why I cringe when people say congrats on no pain or lucky to not have pain! Its actually not a good thing as its part of the reason for bad balance, ataxic gait and possible loss of mobility.
I always wandered why I didnt have the pain others described (did have uncomfortable sensations) as I was originally told I had just neuropathy. A year later I was retested and it was confirmed as large fibre sensory motor neuropathy. I found the original test report online and that was the original diagnosis but again it was never explained to me. My stomache dropped when I googled what this meant as originally I thought I would have to learn to accept pain.
Anyhows I wander if that is the same reason you are not feeling pain? I also wander why the doctors are still useless even now that I know my exact diagnosis.
Sorry for lengthy message but this disease has effed my head up cognitively as well.
Oh my left leg is also weaker than the right. This disease is bullshit man
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1 Reaction@megidigo Correct, I have no pain. Now 11 years into this, I mostly have numbness from shins to toes, a feeling of tight socks, poor balance and for the most part walk with a cane. I have axonal sensory motor PN, no autonomic features as of a few years back. I have bilateral drop foot. The fact you have hammertoes and high arches, did the doctor do a test for Charcot-Marie-Tooth? I went to a neuro doc and told him my grandmother had hammer toes, and he ordered a CMT test, came back negative. What a complicated mess.
@njed I have wandered about CMT but when I mentioned the toes and arches the neurologist didnt say much other than its the motor nerves causing it.
I noticed one day in the mirror my arch wasnt flattening / retracting. I put the bad balance down due to neuropathy but its the high arches causing me to walk on the outside of me feet. Its an annoying uncomfortable feeling.
I guess its not CMT as no one else in my family has CMT and I believe its hereditary? I might as well have it though since the symptoms are the same including muscle wasting. Mine is axonal as well.
Has anything helped you at all in the 11 years?
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Helpful -
Hug
2 Reactions@megidigo I’ve had several exams over the years and I can’t recall what they were. Most Dr’s just say that I have PN and try not to fall. I’m 86 now so I just deal with it. My life hasn’t changed much other than hanging up my wings in 2006. I can still drive and shop with my wife. There will never be a cure for PN, I’m just lucky to be pain free. I know that working out at Planet fitness helps a lot. I’m there 5 days a week. I do leg and calf exercises along with others.
Semper Fi
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Helpful -
Hug
1 Reaction@megidigo Anything helped me? Short answer, no. But...I know this is a progressive situation and I try to keep active and keep moving as much as I can. Walking is important. Even short distances and often. I feel by keeping active, it may not stop progression but may slow it down. I've often posted on this site to look at what you can do and NOT what you can't do. Wish you the best! Ed
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Hug
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