I did go through with spinal stimulation trials. I did it twice. The first was with NERVO which did not help at all. In fact, I came out worse. In the middle of the trial I developed a burning pain in my lower legs at night when I sleep. Doctor thinks it Restless Leg Syndrome but none of the meds work and I don't suffer from movement issues just the burning pain. It wakes me up 2 to 4 times a night when I have to walk around to lessen the pain before returning to bed.
We decided to give it another try with Boston Scientific which was also a failure. ( I was desperate for a solution and was talked into it). So the Spinal Stimulation experience did not work at all for me and even make my pain worse, although I guess it can be argued that my "Sleep Pain" was not caused by the stimulation but for me it is too big of a consequence to say the stimulations was not the cause.
In addition I found the process of inserting the leads into my spine was very painful.
Hello,
I am new to this group. I am about 9 months into my diagnosis of Idiopathic progressive Polyneuropathy. I was a heavy wine drinker for many years. Once I gave it up due to a medical emergency and began feeling symptoms while I was hospitalized starting in knees and legs then into my trunk, arms, hands and feet. The neurologists did blood work, EMG's, checked for diabetes and stroke-all negative. The only lab work they did not complete at the lab was the Gd1a test. They were out of supply of the regent used to test it. He seems to be leaning to PN that is related to alcohol [he too is not seeming too interested in me]. I am having a hard time dealing with it. I don't drink anymore and I am taking good care of my body now. I can't drive anymore either. Just here to listen and learn and to be with others with Alcohol PN.
Thank you all for listening 🙂
Hello,
I am new to this group. I am about 9 months into my diagnosis of Idiopathic progressive Polyneuropathy. I was a heavy wine drinker for many years. Once I gave it up due to a medical emergency and began feeling symptoms while I was hospitalized starting in knees and legs then into my trunk, arms, hands and feet. The neurologists did blood work, EMG's, checked for diabetes and stroke-all negative. The only lab work they did not complete at the lab was the Gd1a test. They were out of supply of the regent used to test it. He seems to be leaning to PN that is related to alcohol [he too is not seeming too interested in me]. I am having a hard time dealing with it. I don't drink anymore and I am taking good care of my body now. I can't drive anymore either. Just here to listen and learn and to be with others with Alcohol PN.
Thank you all for listening 🙂
Hello @pippy023, Welcome to Connect. You are not alone and Connect is a great place to share experiences and learn from each other. I have idiopathic small fiber peripheral neuropathy and have shared my story in another discussion here - https://connect.mayoclinic.org/comment/310341/.
Although my neuropathy is not caused by alcohol, I also chose to stop drinking any alcohol just because it can damage the nervous system. The Foundation for Peripheral Neuropathy has a lot of good information on living well with neuropathy that you might find helpful here -- https://www.foundationforpn.org/living-well/.
It's good to hear that you have focused on taking good care of your body now. I wished I would have learned that lesson a lot sooner. Have you made any other lifestyle changes?
Hello,
I am new to this group. I am about 9 months into my diagnosis of Idiopathic progressive Polyneuropathy. I was a heavy wine drinker for many years. Once I gave it up due to a medical emergency and began feeling symptoms while I was hospitalized starting in knees and legs then into my trunk, arms, hands and feet. The neurologists did blood work, EMG's, checked for diabetes and stroke-all negative. The only lab work they did not complete at the lab was the Gd1a test. They were out of supply of the regent used to test it. He seems to be leaning to PN that is related to alcohol [he too is not seeming too interested in me]. I am having a hard time dealing with it. I don't drink anymore and I am taking good care of my body now. I can't drive anymore either. Just here to listen and learn and to be with others with Alcohol PN.
Thank you all for listening 🙂
Hi pippy023,
Did stopping drinking alcohol help. I have stopped drinking alcohol and I didn't notice much difference. One benefit I get is my balance is better, maybe because my fear of falling is diminished.
Hello @pippy023, Welcome to Connect. You are not alone and Connect is a great place to share experiences and learn from each other. I have idiopathic small fiber peripheral neuropathy and have shared my story in another discussion here - https://connect.mayoclinic.org/comment/310341/.
Although my neuropathy is not caused by alcohol, I also chose to stop drinking any alcohol just because it can damage the nervous system. The Foundation for Peripheral Neuropathy has a lot of good information on living well with neuropathy that you might find helpful here -- https://www.foundationforpn.org/living-well/.
It's good to hear that you have focused on taking good care of your body now. I wished I would have learned that lesson a lot sooner. Have you made any other lifestyle changes?
The other big lifestyle change I'm trying to make is to think more positive about things since I tend to be a negative thinker most of my life. This is even harder than just eating right because it's about retraining my brain now. Thank you for the link to the neuropathy foundation I have it saved in my favorites as well.
Hi pippy023,
Did stopping drinking alcohol help. I have stopped drinking alcohol and I didn't notice much difference. One benefit I get is my balance is better, maybe because my fear of falling is diminished.
Hi Texasflyboy,
No my condition didn't get better matter of fact it probably got a little worse. But if it's the alcohol I can understand because I did drink quite a bit throughout my life. But I can't go back to having alcohol because I have fallen several times in the past under the influence and that's probably what wound me up in the hospital with a clot in my lungs. That's when I started going all numb and tingly and that's when I started to make the changes I needed in my life and I left alcohol out of
It. You're making the right choice by not drinking. Fear is a big factor and motivator. I know for me I don't want to fall again ever if I can help it. Take care and be safe.
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I did go through with spinal stimulation trials. I did it twice. The first was with NERVO which did not help at all. In fact, I came out worse. In the middle of the trial I developed a burning pain in my lower legs at night when I sleep. Doctor thinks it Restless Leg Syndrome but none of the meds work and I don't suffer from movement issues just the burning pain. It wakes me up 2 to 4 times a night when I have to walk around to lessen the pain before returning to bed.
We decided to give it another try with Boston Scientific which was also a failure. ( I was desperate for a solution and was talked into it). So the Spinal Stimulation experience did not work at all for me and even make my pain worse, although I guess it can be argued that my "Sleep Pain" was not caused by the stimulation but for me it is too big of a consequence to say the stimulations was not the cause.
In addition I found the process of inserting the leads into my spine was very painful.
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Helpful -
Hug
4 ReactionsHello,
I am new to this group. I am about 9 months into my diagnosis of Idiopathic progressive Polyneuropathy. I was a heavy wine drinker for many years. Once I gave it up due to a medical emergency and began feeling symptoms while I was hospitalized starting in knees and legs then into my trunk, arms, hands and feet. The neurologists did blood work, EMG's, checked for diabetes and stroke-all negative. The only lab work they did not complete at the lab was the Gd1a test. They were out of supply of the regent used to test it. He seems to be leaning to PN that is related to alcohol [he too is not seeming too interested in me]. I am having a hard time dealing with it. I don't drink anymore and I am taking good care of my body now. I can't drive anymore either. Just here to listen and learn and to be with others with Alcohol PN.
Thank you all for listening 🙂
-
Like -
Helpful -
Hug
2 ReactionsHello @pippy023, Welcome to Connect. You are not alone and Connect is a great place to share experiences and learn from each other. I have idiopathic small fiber peripheral neuropathy and have shared my story in another discussion here - https://connect.mayoclinic.org/comment/310341/.
Although my neuropathy is not caused by alcohol, I also chose to stop drinking any alcohol just because it can damage the nervous system. The Foundation for Peripheral Neuropathy has a lot of good information on living well with neuropathy that you might find helpful here -- https://www.foundationforpn.org/living-well/.
It's good to hear that you have focused on taking good care of your body now. I wished I would have learned that lesson a lot sooner. Have you made any other lifestyle changes?
-
Like -
Helpful -
Hug
1 ReactionHi pippy023,
Did stopping drinking alcohol help. I have stopped drinking alcohol and I didn't notice much difference. One benefit I get is my balance is better, maybe because my fear of falling is diminished.
-
Like -
Helpful -
Hug
1 ReactionThe other big lifestyle change I'm trying to make is to think more positive about things since I tend to be a negative thinker most of my life. This is even harder than just eating right because it's about retraining my brain now. Thank you for the link to the neuropathy foundation I have it saved in my favorites as well.
-
Like -
Helpful -
Hug
3 ReactionsHi Texasflyboy,
No my condition didn't get better matter of fact it probably got a little worse. But if it's the alcohol I can understand because I did drink quite a bit throughout my life. But I can't go back to having alcohol because I have fallen several times in the past under the influence and that's probably what wound me up in the hospital with a clot in my lungs. That's when I started going all numb and tingly and that's when I started to make the changes I needed in my life and I left alcohol out of
It. You're making the right choice by not drinking. Fear is a big factor and motivator. I know for me I don't want to fall again ever if I can help it. Take care and be safe.
-
Like -
Helpful -
Hug
2 Reactions