@dbeshears1 - On your post, I can almost assure you that if or when a treatment plan is discovered to cure PN, you will not get that call back to come in. Just my opinion here, there are over 100 different types of neuropathies and if that isn't bad enough, well over 100 various causes. No doubt, one of the leading causes is diabetes. But, when you begin to think about the low numbers of people under 30 years old with PN and the number of people over 50 with PN, no doubt, age has to be considered. Could the cause be related to the things we do over our life, like falls or is it from taking certain meds like antibiotics or outside effects that we are exposed to during our life like toxins or did we inherit PN. Or a combination of things. It is hard to pin down which makes this difficult. Neuro docs can't look into our past but if they could, they might see a clue. Even so, what is the cure? At one point, I wanted to know the cause of my PN. My neuro doc said what's the difference, there is no cure even if you do find out the cause. Hmmm...good point! I stopped looking at the why and figured I better look into how to live with this the best I can. Each person has to figure out their best way to live with PN. Best to all in 23!
Coleen. I have neuropathy but not sure what itis called. I have numbness in hands feet legs arms and-some in the stomach. The most trustrating thing is I cannot get my doctors to agree what is causing it. I am a lung cancer .
Survivor . I was diagnosed in November 2011. I have been on two different targeted therapies and have radiation and chemo as well. Through blood tests they found an autoantibody called LGM. I have had multiple tests done to see jif this is causing the neuropathy. Has anyone else been diagnosed with this autoantibody? I am trying to get an appointment with Mayo to see what their Doctors thunk is causing this. Ii am looking for a Doctor that would be a good fit with all my problems. Oh I forgot to mention I was diagnosed with Lupus in 2020. Thank you for allowing me to join the group.
Coleen. I have neuropathy but not sure what itis called. I have numbness in hands feet legs arms and-some in the stomach. The most trustrating thing is I cannot get my doctors to agree what is causing it. I am a lung cancer .
Survivor . I was diagnosed in November 2011. I have been on two different targeted therapies and have radiation and chemo as well. Through blood tests they found an autoantibody called LGM. I have had multiple tests done to see jif this is causing the neuropathy. Has anyone else been diagnosed with this autoantibody? I am trying to get an appointment with Mayo to see what their Doctors thunk is causing this. Ii am looking for a Doctor that would be a good fit with all my problems. Oh I forgot to mention I was diagnosed with Lupus in 2020. Thank you for allowing me to join the group.
Hello @sal99, Welcome to Connect. Congratulations on being a lung cancer survivor since 2011. One of the side effects of treatments is unfortunately neuropathy which can impact your quality of life. There is another discussion that you might find helpful:
--- Chemotherapy-induced neuropathy: What helps get rid of it?: https://connect.mayoclinic.org/discussion/chemotherapy-induced-neuropathy/.
I was diagnosed with CRPS, is anyone familiar with that? Recently I was seen by a new orthopedic surgeon who believed I was misdiagnosed and he sent me to a spine specialist, who said I needed cervical spine surgery but there was no guarantee that it would stop my leg pain. I have requested a visit at Mayo Clinic and I am waiting to see if I am accepted.
I was diagnosed with CRPS, is anyone familiar with that? Recently I was seen by a new orthopedic surgeon who believed I was misdiagnosed and he sent me to a spine specialist, who said I needed cervical spine surgery but there was no guarantee that it would stop my leg pain. I have requested a visit at Mayo Clinic and I am waiting to see if I am accepted.
Coleen. I have neuropathy but not sure what itis called. I have numbness in hands feet legs arms and-some in the stomach. The most trustrating thing is I cannot get my doctors to agree what is causing it. I am a lung cancer .
Survivor . I was diagnosed in November 2011. I have been on two different targeted therapies and have radiation and chemo as well. Through blood tests they found an autoantibody called LGM. I have had multiple tests done to see jif this is causing the neuropathy. Has anyone else been diagnosed with this autoantibody? I am trying to get an appointment with Mayo to see what their Doctors thunk is causing this. Ii am looking for a Doctor that would be a good fit with all my problems. Oh I forgot to mention I was diagnosed with Lupus in 2020. Thank you for allowing me to join the group.
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@dbeshears1 - On your post, I can almost assure you that if or when a treatment plan is discovered to cure PN, you will not get that call back to come in. Just my opinion here, there are over 100 different types of neuropathies and if that isn't bad enough, well over 100 various causes. No doubt, one of the leading causes is diabetes. But, when you begin to think about the low numbers of people under 30 years old with PN and the number of people over 50 with PN, no doubt, age has to be considered. Could the cause be related to the things we do over our life, like falls or is it from taking certain meds like antibiotics or outside effects that we are exposed to during our life like toxins or did we inherit PN. Or a combination of things. It is hard to pin down which makes this difficult. Neuro docs can't look into our past but if they could, they might see a clue. Even so, what is the cure? At one point, I wanted to know the cause of my PN. My neuro doc said what's the difference, there is no cure even if you do find out the cause. Hmmm...good point! I stopped looking at the why and figured I better look into how to live with this the best I can. Each person has to figure out their best way to live with PN. Best to all in 23!
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3 ReactionsHas anyone tried Hoka sneakers
for neuropathy or another brand?
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1 Reaction@roslyn, you might want to read through this discussion to learn what type of shoes others have found helpful for neuropathy:
-- Does anyone find that a type of shoe helps your foot neuropathy?
https://connect.mayoclinic.org/discussion/does-anyone-find-that-a-brand-of-shoes-helps-your-foot-neuropathy/
Coleen. I have neuropathy but not sure what itis called. I have numbness in hands feet legs arms and-some in the stomach. The most trustrating thing is I cannot get my doctors to agree what is causing it. I am a lung cancer .
Survivor . I was diagnosed in November 2011. I have been on two different targeted therapies and have radiation and chemo as well. Through blood tests they found an autoantibody called LGM. I have had multiple tests done to see jif this is causing the neuropathy. Has anyone else been diagnosed with this autoantibody? I am trying to get an appointment with Mayo to see what their Doctors thunk is causing this. Ii am looking for a Doctor that would be a good fit with all my problems. Oh I forgot to mention I was diagnosed with Lupus in 2020. Thank you for allowing me to join the group.
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6 ReactionsHello @sal99, Welcome to Connect. Congratulations on being a lung cancer survivor since 2011. One of the side effects of treatments is unfortunately neuropathy which can impact your quality of life. There is another discussion that you might find helpful:
--- Chemotherapy-induced neuropathy: What helps get rid of it?: https://connect.mayoclinic.org/discussion/chemotherapy-induced-neuropathy/.
One of the best things you can do to help yourself is to learn as much as you can about your neuropathy condition and what treatments might provide some relief. Here are a couple of sites that provide a lot of good information on neuropathy.
--- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/.
You may also be interested in this related discussion:
--- Anyone with lupus or SLE: How do you manage your condition?
https://connect.mayoclinic.org/discussion/sle/
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7 ReactionsI was diagnosed with CRPS, is anyone familiar with that? Recently I was seen by a new orthopedic surgeon who believed I was misdiagnosed and he sent me to a spine specialist, who said I needed cervical spine surgery but there was no guarantee that it would stop my leg pain. I have requested a visit at Mayo Clinic and I am waiting to see if I am accepted.
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3 ReactionsI have been wearing Hokas since December and I really like them. I walk 3-4 miles 5-6 days a week. They provide support and are very light.
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4 ReactionsWelcome @finny4606, There is another discussion on CRPS that you might find helpful here:
--- CRPS - anyone suffering with complex regional pain syndrome: https://connect.mayoclinic.org/discussion/crps-anyone-suffering-with-chronic-repetative-pain-syndrome/.
@jenniferhunter started another discussion that I think you may also find helpful since you mentioned cervical spine surgery was recommended with no guarantees that it would help with your leg pain:
--- Answers about Controversial Trends in Spine Care: https://connect.mayoclinic.org/discussion/controversial-trends-in-spine-care/.
Did the spine specialist refer you to Mayo Clinic?
What antibiotics did you take in recovery. I have heard ciprofloxin can cause peripheral neuropathy.
That is true but the Doctors seem to think that is not it.