John, Volunteer Mentor | @johnbishop | Nov 5, 2016
Hi @tbeckys, what Peripheral Neurology site are you referring to? Is it The Foundation for Peripheral Neuropathy's website - https://www.foundationforpn.org? I did join last year but I'm not sure of the actual value it has as I think a lot of the information is available on other sites. I think they use membership as a way to raise donation money for research. You receive a regular newsletter - monthly or bi-monthly and access to more of their documents/videos. You can still view a lot of their information without a membership.
Mayo Clinic has quite a lot of information available on their site - http://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/home/ovc-20204944.
Also there is a YouTube channel for the Neuropathy Association that has a lot interesting/informative videos on Neuropathy that may be helpful - https://www.youtube.com/user/TheNeuropathyAssocia. This is a link I found on the Minnesota Neuropathy Associations website - http://www.neuropathy-mn.org/. I also belong to this organization as it was the first and closest support organization I found. They have about 8 or 9 monthly meetings a year but do not normally meet during the bad weather months.
Husband has autonomic neurology with pain especially in his hand. He wears golf gloves and says it cuts the pain in half. Neurologist at Mayo says he can't help him as he needs a muscle/neurologist. Has tests on November 14 and hopefully will see a doctor after that. Gabapentin and Lyrica does not work for him.
I am being treated by a neurologist for neuropothy > I do not have diabetics. He increased my gabapentin to help with pain. I take 300 mgs of gabapentin and a lor tab at 4 pm and 600 mgs of gabapentin at 11pm. He also put me on 5000 mgs of under the tongue vit B-12. I was already having shots every 3 weeks. He wants my B-12 in the high numbers. I have already gotten relief. try the vit b-12 both shots and under the tongue to see if it helps
Husband has autonomic neurology with pain especially in his hand. He wears golf gloves and says it cuts the pain in half. Neurologist at Mayo says he can't help him as he needs a muscle/neurologist. Has tests on November 14 and hopefully will see a doctor after that. Gabapentin and Lyrica does not work for him.
I have autonomic/peripheral neuropathy caused by GPA/Wegeners (vasculitis) for 6 yrs. I take gabapentin for the pain and cymbalta for the anxiety that goes along with it. I'm seeing a rheumotologist at Mayo Clinic in Scottsdale, AZ for these and he has also prescribed 50mcg fentanyl patches which has helped immensely. The combination does have side effects, mainly dizziness, which I deal with because of the pain relief benefit. The numdness does go along with neuropathy. That is the next most difficult obstacle. Trying to do anything, especially small is very frustrating. Buttons, zippers, coins, etc. are a nightmare at times. However, I have other health issues to deal with as well. More meds and doctors. It appears as though I will be dealing with this for the rest of my life. I turned 65 last Oct 2015.
I have autonomic/peripheral neuropathy caused by GPA/Wegeners (vasculitis) for 6 yrs. I take gabapentin for the pain and cymbalta for the anxiety that goes along with it. I'm seeing a rheumotologist at Mayo Clinic in Scottsdale, AZ for these and he has also prescribed 50mcg fentanyl patches which has helped immensely. The combination does have side effects, mainly dizziness, which I deal with because of the pain relief benefit. The numdness does go along with neuropathy. That is the next most difficult obstacle. Trying to do anything, especially small is very frustrating. Buttons, zippers, coins, etc. are a nightmare at times. However, I have other health issues to deal with as well. More meds and doctors. It appears as though I will be dealing with this for the rest of my life. I turned 65 last Oct 2015.
2 weeks ago I started taking Horizant (gabapentin enacarbil), 600 mg per day, an extended release med. It has considerably reduced the burning in my right leg and foot. I had taken regular gabapentin, up to 900 mg a day, with no real results, so I was skeptical when a pain specialist prescribed this. Apparently it's absorbed by the body differently from regular gabapentin. It has helped me tremendously. I still have some of the burning sensation, but it's much less intense than it was before. Worth a try. I think it's supposed to be available in generic form soon.
2 weeks ago I started taking Horizant (gabapentin enacarbil), 600 mg per day, an extended release med. It has considerably reduced the burning in my right leg and foot. I had taken regular gabapentin, up to 900 mg a day, with no real results, so I was skeptical when a pain specialist prescribed this. Apparently it's absorbed by the body differently from regular gabapentin. It has helped me tremendously. I still have some of the burning sensation, but it's much less intense than it was before. Worth a try. I think it's supposed to be available in generic form soon.
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Has anyone joined the Peripheral Neurlogy site and is it worth the $30 they charge to join?
Hi @tbeckys, what Peripheral Neurology site are you referring to? Is it The Foundation for Peripheral Neuropathy's website - https://www.foundationforpn.org? I did join last year but I'm not sure of the actual value it has as I think a lot of the information is available on other sites. I think they use membership as a way to raise donation money for research. You receive a regular newsletter - monthly or bi-monthly and access to more of their documents/videos. You can still view a lot of their information without a membership.
Mayo Clinic has quite a lot of information available on their site - http://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/home/ovc-20204944.
Also there is a YouTube channel for the Neuropathy Association that has a lot interesting/informative videos on Neuropathy that may be helpful -
https://www.youtube.com/user/TheNeuropathyAssocia. This is a link I found on the Minnesota Neuropathy Associations website - http://www.neuropathy-mn.org/. I also belong to this organization as it was the first and closest support organization I found. They have about 8 or 9 monthly meetings a year but do not normally meet during the bad weather months.
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1 ReactionI am being treated by a neurologist for neuropothy > I do not have diabetics. He increased my gabapentin to help with pain. I take 300 mgs of gabapentin and a lor tab at 4 pm and 600 mgs of gabapentin at 11pm. He also put me on 5000 mgs of under the tongue vit B-12. I was already having shots every 3 weeks. He wants my B-12 in the high numbers. I have already gotten relief. try the vit b-12 both shots and under the tongue to see if it helps
hav e U gtried Gabapentin? I take 300 mg. 2 or 3 times a day.
Maybe medical cannabis would help. Ask his Mayo doctor how to get it.<br><br>Nancy Shermoen~
You use medical Cannibis am I correct?<br><br>Nancy Shermoen~
Yes
2 weeks ago I started taking Horizant (gabapentin enacarbil), 600 mg per day, an extended release med. It has considerably reduced the burning in my right leg and foot. I had taken regular gabapentin, up to 900 mg a day, with no real results, so I was skeptical when a pain specialist prescribed this. Apparently it's absorbed by the body differently from regular gabapentin. It has helped me tremendously. I still have some of the burning sensation, but it's much less intense than it was before. Worth a try. I think it's supposed to be available in generic form soon.
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1 ReactionHello @grandmacheryl, I had not heard of the gabapentin enacarbil so had to look it up. Here is a link that discusses it's use - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002665/. Glad it is working for you.
Too technical. Mayo Clinic also indicates improvement with the newer drug for RLS but does not make comparisons for NP in general.