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.
@artscaping- Chris, thank you for sharing the way you are handling your journey. It should be printed & framed in every Doctors office. I know for myself I will certainly save your post and reread as needed in this journey through life. God bless, @thankful- Jim
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.
@alanhny- My wife realized I had reversed the Statins in my post. It should be that I started with Atorvastatin and am now on Simvastatin. Sorry for the misinfomation.
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.
Thanks so much for this info, Johnhans. Nobody in my family I know of has the condition and I dont have the info about large bundle or small fibre, which i will now ask about. Thanks again.
@alanhny- Hang in there my friend! Sorry to hear about the extent of your Neuropathy. It just seems that someone has to come up with something soon with as many that are having these terrible systoms! Thinking of you tonight. Jim T.
My neurologist has diagnosed me with peripheral neuropathy, but I don't really understand it. I know I have pain, numbness and tingling in my left leg.and foot I thought it was the after affects of the shingles about 5 years ago. I also have restless legs and back problems big time. My legs and feet cramp when I sit and during the night. I am taking Pramipexole and Gabapentin. I am alo on oxygen only at night. Does peripheral neuropathy get worse as time goes on? My right leg is starting to have the same symptoms.
My neurologist has diagnosed me with peripheral neuropathy, but I don't really understand it. I know I have pain, numbness and tingling in my left leg.and foot I thought it was the after affects of the shingles about 5 years ago. I also have restless legs and back problems big time. My legs and feet cramp when I sit and during the night. I am taking Pramipexole and Gabapentin. I am alo on oxygen only at night. Does peripheral neuropathy get worse as time goes on? My right leg is starting to have the same symptoms.
Hello Eve (@hosta) -- I have had small fiber peripheral neuropathy for over 20 years but only have the numbness and no associated pain. I have no medical training or background but I know each of us are different when it comes to peripheral neuropathy. Here is an easy to understand explanation of small fiber peripheral neuropathy by Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin:
-- https://youtu.be/8nrv7lRvvwU
My neurologist has diagnosed me with peripheral neuropathy, but I don't really understand it. I know I have pain, numbness and tingling in my left leg.and foot I thought it was the after affects of the shingles about 5 years ago. I also have restless legs and back problems big time. My legs and feet cramp when I sit and during the night. I am taking Pramipexole and Gabapentin. I am alo on oxygen only at night. Does peripheral neuropathy get worse as time goes on? My right leg is starting to have the same symptoms.
Peripheral neuropathy is indeed different for each of us. Mine progressed rapidly up my legs to the knee, then stopped. Is also in my hands. I take Gabapentin to control pain or stinging. No side effects. I have learned to live with it and do not give it much thought. I deal with a bulging disc which causes Sciatica which takes my mind off most of my other problems. 🙂
I have had good results with Gabapentin at 300 mg. dose ,twice or three times daily, for several mos. now. One resident here has been using Lyrica for over one year, a trade name, with success.
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@artscaping- Chris, thank you for sharing the way you are handling your journey. It should be printed & framed in every Doctors office. I know for myself I will certainly save your post and reread as needed in this journey through life. God bless, @thankful- Jim
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1 Reaction@alanhny- My wife realized I had reversed the Statins in my post. It should be that I started with Atorvastatin and am now on Simvastatin. Sorry for the misinfomation.
Look for yoga for Performs Syndrome.
Got it, thanks.
@alanhny- Hang in there my friend! Sorry to hear about the extent of your Neuropathy. It just seems that someone has to come up with something soon with as many that are having these terrible systoms! Thinking of you tonight. Jim T.
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1 ReactionMy neurologist has diagnosed me with peripheral neuropathy, but I don't really understand it. I know I have pain, numbness and tingling in my left leg.and foot I thought it was the after affects of the shingles about 5 years ago. I also have restless legs and back problems big time. My legs and feet cramp when I sit and during the night. I am taking Pramipexole and Gabapentin. I am alo on oxygen only at night. Does peripheral neuropathy get worse as time goes on? My right leg is starting to have the same symptoms.
Hello Eve (@hosta) -- I have had small fiber peripheral neuropathy for over 20 years but only have the numbness and no associated pain. I have no medical training or background but I know each of us are different when it comes to peripheral neuropathy. Here is an easy to understand explanation of small fiber peripheral neuropathy by Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin:
-- https://youtu.be/8nrv7lRvvwU
You might also be interested in the following discussion in the Sleep Health Group - Restless Leg Syndrome:
-- https://connect.mayoclinic.org/discussion/restless-leg-syndrome-2a74e5/
John
Peripheral neuropathy is indeed different for each of us. Mine progressed rapidly up my legs to the knee, then stopped. Is also in my hands. I take Gabapentin to control pain or stinging. No side effects. I have learned to live with it and do not give it much thought. I deal with a bulging disc which causes Sciatica which takes my mind off most of my other problems. 🙂
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1 ReactionI am dealing with neuropathy I have tried gabapetin (spelling?)pills and foot rub. Nothing has worked. It is difficult to walk.
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1 ReactionI have had good results with Gabapentin at 300 mg. dose ,twice or three times daily, for several mos. now. One resident here has been using Lyrica for over one year, a trade name, with success.
Try pain relief with acetaminophen too.
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