I would like to welcome you to Connect. We are glad you found us. It sounds like you are also dealing with peripheral neuropathy from chemo treatments. Are you still having chemo treatments? If you are able, can you share a little more about your neuropathy and anything you have found that makes it a little better?
I was diagnosed with idiopathic peripheral neuropathy about three years ago. It started with just slight tingling in toes and in stages has progessed to painful stinging, pins and needles in both feet and now working its way up both legs. I've tried standard palliative medications, Lyrica, Gabapentin, etc and have tolrance problems with them. Nothing in blood tests so far identifies a suspect cause and now my doctor has ordered additional blood tests and a spinal tap. For these additional blood tests I'm told expense could be considerable, depending on my insurance, but here is bottom line for me. I am under impression that it is unusual to find treatable cause for IPN, which is why such a high percentage of cases remain idiopathic, and at any point process could accelerate to where i need a wheel chair or even face major organ failure. This scares the heck out of me. I'm a 77-year-old man otherwise in good health and I've got a few more things I'd very much to do in this life before I join my ancestors in the sky. I'm not sure of the mechanics of this groups so I'm just going to post this and see what comes back. I think there's a moderator in here somewhere. I have enormous respect for the Mayo Clinic and I was so glad to find this group. There's so much questionable stuff out there on line on this subject and and just about any other.
I was also diagnosed with peripheral neuropathy many years ago and they were unable to find a cause. I take Gabapentin and it has helped relieve the burning and stinging that I had in the beginning. It seems my neuropathy has only come up as far as my knees and in my hands. It has been stable for a long number of years and my doctor does not expect it to go further, for which I am thankful. It seems to go no further for some people.
Hello @alanhny -- Welcome to Connect. I'm glad you found us. Connect is a great place to ask questions and learn what others with similar health concerns are doing for treatments. I also have idiopathic small fiber peripheral neuropathy and have had it for over 20+ years, although I was only recently diagnosed in 2016. I will turn 75 this month so I can relate to many of your concerns. You can read more about my neuropathy and what has worked for me here:
-- https://connect.mayoclinic.org/comment/65985/bookmark/?ajax_hook=action&_wpnonce=6144dd1510
You are right to be cautious on treatments as there is a lot of questionable stuff out there and it is important to do your own research when making decisions. Mayo Connect is a good resource when asking questions and sharing what has and hasn't worked for you.
I've had it for three years and it has gotten progressively worse. I can't tolerate standard medication like Lyrica, Gabapentin, blood tests up to now haven't been helpful in identifying cause. Will be having more blood tests and spinal tap but getting pessimistic tht this will remain idiopathic with my ending up in a wheel chair or worse--Alan
I was diagnosed with idiopathic peripheral neuropathy about three years ago. It started with just slight tingling in toes and in stages has progessed to painful stinging, pins and needles in both feet and now working its way up both legs. I've tried standard palliative medications, Lyrica, Gabapentin, etc and have tolrance problems with them. Nothing in blood tests so far identifies a suspect cause and now my doctor has ordered additional blood tests and a spinal tap. For these additional blood tests I'm told expense could be considerable, depending on my insurance, but here is bottom line for me. I am under impression that it is unusual to find treatable cause for IPN, which is why such a high percentage of cases remain idiopathic, and at any point process could accelerate to where i need a wheel chair or even face major organ failure. This scares the heck out of me. I'm a 77-year-old man otherwise in good health and I've got a few more things I'd very much to do in this life before I join my ancestors in the sky. I'm not sure of the mechanics of this groups so I'm just going to post this and see what comes back. I think there's a moderator in here somewhere. I have enormous respect for the Mayo Clinic and I was so glad to find this group. There's so much questionable stuff out there on line on this subject and and just about any other.
Your story and mine are almost carbon copies! Mine started as just hot sensations in my feet and progressed to burning, crushed glass feeling in my toes and a few numb spots that has leveled off the last couple of years after gradually getting worse the first 4-5. Had all the blood work, nerve conduction studies etc. and never have found anything that can remotely be aligned as a cause. Was told that I am one of the unlucky 15% that will never know why, sounds great huh. I am one that leans toward the idea that being over treated with a statin drug right before this started as the cause for my issues and some doctors will even talk the theory but none want to come right out and admit possible as they all are complicit in the over prescribing of statins. Don’t fall for all the miracle treatments on the web that will start to flood your inbox if you research there as I have had no luck with any of the creams pills etc. Good luck with your treatment, hoping you find something to treat or at least a medication that will help with the symptoms. I was an avid runner that did a marathon and averaged 30 miles a week for years and then walked and hour each morning before work and now am lucky to survive a trip to the grocery store, cannot be on my feet more than 20-30 minutes without paying a large price.
I've had it for three years and it has gotten progressively worse. I can't tolerate standard medication like Lyrica, Gabapentin, blood tests up to now haven't been helpful in identifying cause. Will be having more blood tests and spinal tap but getting pessimistic tht this will remain idiopathic with my ending up in a wheel chair or worse--Alan
Hello Alan (@alanhny) -- have you seen a neurologist? I have no medical training and background but I'm not sure that just because your neuropathy could be idiopathic is that big of a deal. There are lifestyle changes people with neuropathy that can make living with neuropathy easier. The Foundation for Peripheral Neuropathy has some good information that may help here:
-- https://www.foundationforpn.org/living-well/
My biggest fear was losing the ability to drive due to the neuropathy progessing up my legs. My hope is in research finding methods to help repair nerves. Currently all the drugs and medications do is block the pain signals and do nothing to fix the problem - damaged nerves. The drugs also come with many severe side effects that can be as bad or worse than what they are treating (IMHO). So I'm always excited when I see new research even if I know it may never be available in my lifetime. I'm hopeful for others. I just ran across these that offer some hope:
Hi John, thanks for your reply. Yes, I've seen several neurologists over the past three years; the current one seems the most aggressive in terms of testing, which I think overall is a good thing. I will check out these links you sent. I also don't want to become so obsessessed with this insidious condition that I don't do the things that are most important to me.
Hi Alan, glad to see you here. I have had idopathic peripheral neuropathy for many years and it only progressed into the bottom of my legs. I had all of the tests run that are possible and nothing showed as a cause. Does anyone else in your family have this? That could indicate a genetic cause. IPN does not usually kill. The only cases of death from neuropathy are among the diagnosed cases of small fiber neuropathy. As John Bishop pointed out, even he has that for 20 years and is still active. Have they diagnosed you as large bundle or small fiber neuropathy? Doctors do not always tell you, so it would be good to ask if you do not know. I no longer drive due to neuropathy, but there is a paratransit system where I live to take me around. Any other issues of peripheral neuropathy you would like to know about and how to deal with them, please ask.
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What would you call the exercise so I can find it somewhere please
Hello @hjrothermel,
I would like to welcome you to Connect. We are glad you found us. It sounds like you are also dealing with peripheral neuropathy from chemo treatments. Are you still having chemo treatments? If you are able, can you share a little more about your neuropathy and anything you have found that makes it a little better?
John
I was diagnosed with idiopathic peripheral neuropathy about three years ago. It started with just slight tingling in toes and in stages has progessed to painful stinging, pins and needles in both feet and now working its way up both legs. I've tried standard palliative medications, Lyrica, Gabapentin, etc and have tolrance problems with them. Nothing in blood tests so far identifies a suspect cause and now my doctor has ordered additional blood tests and a spinal tap. For these additional blood tests I'm told expense could be considerable, depending on my insurance, but here is bottom line for me. I am under impression that it is unusual to find treatable cause for IPN, which is why such a high percentage of cases remain idiopathic, and at any point process could accelerate to where i need a wheel chair or even face major organ failure. This scares the heck out of me. I'm a 77-year-old man otherwise in good health and I've got a few more things I'd very much to do in this life before I join my ancestors in the sky. I'm not sure of the mechanics of this groups so I'm just going to post this and see what comes back. I think there's a moderator in here somewhere. I have enormous respect for the Mayo Clinic and I was so glad to find this group. There's so much questionable stuff out there on line on this subject and and just about any other.
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Helpful -
Hug
2 ReactionsI was also diagnosed with peripheral neuropathy many years ago and they were unable to find a cause. I take Gabapentin and it has helped relieve the burning and stinging that I had in the beginning. It seems my neuropathy has only come up as far as my knees and in my hands. It has been stable for a long number of years and my doctor does not expect it to go further, for which I am thankful. It seems to go no further for some people.
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Helpful -
Hug
1 ReactionHello @alanhny -- Welcome to Connect. I'm glad you found us. Connect is a great place to ask questions and learn what others with similar health concerns are doing for treatments. I also have idiopathic small fiber peripheral neuropathy and have had it for over 20+ years, although I was only recently diagnosed in 2016. I will turn 75 this month so I can relate to many of your concerns. You can read more about my neuropathy and what has worked for me here:
-- https://connect.mayoclinic.org/comment/65985/bookmark/?ajax_hook=action&_wpnonce=6144dd1510
I am tagging @artscaping, @jimhd, @swiss, @kevinking, @crystalgal @mikween @crystalgal, @dbentley, and @hoot to see if they have any suggestions or information that might be helpful.
You are right to be cautious on treatments as there is a lot of questionable stuff out there and it is important to do your own research when making decisions. Mayo Connect is a good resource when asking questions and sharing what has and hasn't worked for you.
Hoping you find some answers that help you.
John
I've had it for three years and it has gotten progressively worse. I can't tolerate standard medication like Lyrica, Gabapentin, blood tests up to now haven't been helpful in identifying cause. Will be having more blood tests and spinal tap but getting pessimistic tht this will remain idiopathic with my ending up in a wheel chair or worse--Alan
Your story and mine are almost carbon copies! Mine started as just hot sensations in my feet and progressed to burning, crushed glass feeling in my toes and a few numb spots that has leveled off the last couple of years after gradually getting worse the first 4-5. Had all the blood work, nerve conduction studies etc. and never have found anything that can remotely be aligned as a cause. Was told that I am one of the unlucky 15% that will never know why, sounds great huh. I am one that leans toward the idea that being over treated with a statin drug right before this started as the cause for my issues and some doctors will even talk the theory but none want to come right out and admit possible as they all are complicit in the over prescribing of statins. Don’t fall for all the miracle treatments on the web that will start to flood your inbox if you research there as I have had no luck with any of the creams pills etc. Good luck with your treatment, hoping you find something to treat or at least a medication that will help with the symptoms. I was an avid runner that did a marathon and averaged 30 miles a week for years and then walked and hour each morning before work and now am lucky to survive a trip to the grocery store, cannot be on my feet more than 20-30 minutes without paying a large price.
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2 ReactionsHello Alan (@alanhny) -- have you seen a neurologist? I have no medical training and background but I'm not sure that just because your neuropathy could be idiopathic is that big of a deal. There are lifestyle changes people with neuropathy that can make living with neuropathy easier. The Foundation for Peripheral Neuropathy has some good information that may help here:
-- https://www.foundationforpn.org/living-well/
The National Institutes of Health - Neurological Diagnostic Tests and Procedures Fact Sheet may provide some information to help understand the different tests for neuropathy:
-- https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Neurological-Diagnostic-Tests-and-Procedures-Fact
My biggest fear was losing the ability to drive due to the neuropathy progessing up my legs. My hope is in research finding methods to help repair nerves. Currently all the drugs and medications do is block the pain signals and do nothing to fix the problem - damaged nerves. The drugs also come with many severe side effects that can be as bad or worse than what they are treating (IMHO). So I'm always excited when I see new research even if I know it may never be available in my lifetime. I'm hopeful for others. I just ran across these that offer some hope:
Repairing the Neural Highway by David Holmes in Nature Outline, Dec 13, 2017:
-- https://spinalcordresearchandadvocacy.wordpress.com/2017/12/14/repairing-the-neural-highway-by-david-holmes-in-nature-outline/
Spinal-cord injury: spurring regrowth, Dec 13, 2017:
-- https://www.nature.com/articles/d41586-017-07550-9
John
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2 ReactionsHi John, thanks for your reply. Yes, I've seen several neurologists over the past three years; the current one seems the most aggressive in terms of testing, which I think overall is a good thing. I will check out these links you sent. I also don't want to become so obsessessed with this insidious condition that I don't do the things that are most important to me.
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1 ReactionHi Alan, glad to see you here. I have had idopathic peripheral neuropathy for many years and it only progressed into the bottom of my legs. I had all of the tests run that are possible and nothing showed as a cause. Does anyone else in your family have this? That could indicate a genetic cause. IPN does not usually kill. The only cases of death from neuropathy are among the diagnosed cases of small fiber neuropathy. As John Bishop pointed out, even he has that for 20 years and is still active. Have they diagnosed you as large bundle or small fiber neuropathy? Doctors do not always tell you, so it would be good to ask if you do not know. I no longer drive due to neuropathy, but there is a paratransit system where I live to take me around. Any other issues of peripheral neuropathy you would like to know about and how to deal with them, please ask.
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Like -
Helpful -
Hug
1 Reaction