Hi - I've had peripheral neuropathy in my feet and now legs for a little over 10 years. I'm probably more fortunate than most since mine is mostly numbness and tingling and no sharp pains. My doctors had me on gabapentin for awhile but it did nothing for me and when I discussed it with a new doctor team I was told gabapentin is only for pain and not numbness. I had to have an ECS and MRI before I could meet with a neurologist. The tests confirmed I have nerve damage but we still don't know the root cause. I have an appointment for May 2nd with the neurologist and I'm hoping to find out what type of neuropathy I have which may help when talking with other people with the same type of neuropathy who have found what works for them. Two excellent sources of information are the MN Neuropathy Association (http://www.neuropathy-mn.org/) and the Foundation for Peripheral Neuropathy (https://www.foundationforpn.org/).
Hello to all you asked about my visit with the neurologist. Great visit. Loved the doctor. She sings and plays the violin and we plan to go see her chorale group in concert sometime. Oh, about the medical problem??? Just kidding. She put me on Gabapenten and it is helping greatly. However, I am hightly susceptible to all sleepy type drugs and it knocks me for a loop. Started me on 300 mg which they say is the lower end of the totem pole but I hope I don't have to go any higher. Taking at night and it is knocking me out. Tried twice to take it in the morning as she prescribed and I stumble around all day. Maybe I'll get used to it. My son is on it and says he can't tell he's taking it. My son, by the way, had a heart attack over the last weekend but was in the hosital when it happened so he is prefectly fine now. They put in a stent and he is home now and driving today. They plan to do neurological tests on me but they can't get to me for 2 months so we're at a standstill. However, the Gabapenen is helping with the burning nerves so I can hang on. Thanks for all your interest. I hope all of you are doing well and seeing a light at the end of the tunnel. Emilyanne
John, Volunteer Mentor | @johnbishop | Aug 19, 2016
Just thought I would give an update on my situation. I was supposed to meet with my doctor this afternoon to discuss the carpal tunnel condition that she diagnosed in both my hands at my last appointment. I had a blood test for C-Reactive Protein (CRP), S to check for inflammation and it was at 13.8 mg/L which I guess means my PMR is officially back out of remission. I'm back on 20 mg prednisone which I hope is only temporary. She called and cancelled my appointment for today because she wants to schedule an EMG for the arms/hands and then proceed with surgery for the carpal tunnel in the wrists. Of course none of this is helping with the SFPN in my feet and legs - fortunately I just have the yucky numbness and a little tingling with no sharp pain. I am a little worried about the prednisone and it's possible affects on the neuropathy since I was on it for a few years when my PMR first started back in 2007. Hopefully we will all find an answer that works for us. Just have to keep thinking - left foot, right foot, left foot, right foot...
Just thought I would give an update on my situation. I was supposed to meet with my doctor this afternoon to discuss the carpal tunnel condition that she diagnosed in both my hands at my last appointment. I had a blood test for C-Reactive Protein (CRP), S to check for inflammation and it was at 13.8 mg/L which I guess means my PMR is officially back out of remission. I'm back on 20 mg prednisone which I hope is only temporary. She called and cancelled my appointment for today because she wants to schedule an EMG for the arms/hands and then proceed with surgery for the carpal tunnel in the wrists. Of course none of this is helping with the SFPN in my feet and legs - fortunately I just have the yucky numbness and a little tingling with no sharp pain. I am a little worried about the prednisone and it's possible affects on the neuropathy since I was on it for a few years when my PMR first started back in 2007. Hopefully we will all find an answer that works for us. Just have to keep thinking - left foot, right foot, left foot, right foot...
Just thought I would give an update on my situation. I was supposed to meet with my doctor this afternoon to discuss the carpal tunnel condition that she diagnosed in both my hands at my last appointment. I had a blood test for C-Reactive Protein (CRP), S to check for inflammation and it was at 13.8 mg/L which I guess means my PMR is officially back out of remission. I'm back on 20 mg prednisone which I hope is only temporary. She called and cancelled my appointment for today because she wants to schedule an EMG for the arms/hands and then proceed with surgery for the carpal tunnel in the wrists. Of course none of this is helping with the SFPN in my feet and legs - fortunately I just have the yucky numbness and a little tingling with no sharp pain. I am a little worried about the prednisone and it's possible affects on the neuropathy since I was on it for a few years when my PMR first started back in 2007. Hopefully we will all find an answer that works for us. Just have to keep thinking - left foot, right foot, left foot, right foot...
Thanks John - it really is a blessing that it works and I am thankful for that. I'm just hoping I don't have to be on for too long and I won't have as much trouble when I start reducing the dosage to see if I can get off of it. I know that 20 mgs is not a high amount so that is blessing number 2!. Now I'm waiting for the doctor to schedule the nerve tests for the arms/hands and get the surgeries for carpal tunnel on the schedule.
I've had this for at least 10 years/ Gabapentin has made the 24/7 extreme tingling in my feet bearable & I'm grateful fpr it' Cause has not been determined I don't fall in any of the usual categories, and am told about 25 percent of cases cannot be traced to specific cause.
I now have Atrophie Blanche - no known effective treatment of ankle & foot - dpn't know if that's in this grroup - but would welcome info for pain relief -
- it's sometimes extreme & much worse than the pn pain.
/ Superwife
Because the chemical GBD in Marijuana is known to be a good pain reliever without the "high". Are you shocked that I do not wish to live my last years with extreme pain?
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Thanks for the links. Are there sources for senior citizens with peripheral neuropathy? Any of them somewhat more technical? Thanks.
Hello to all you asked about my visit with the neurologist. Great visit. Loved the doctor. She sings and plays the violin and we plan to go see her chorale group in concert sometime. Oh, about the medical problem??? Just kidding. She put me on Gabapenten and it is helping greatly. However, I am hightly susceptible to all sleepy type drugs and it knocks me for a loop. Started me on 300 mg which they say is the lower end of the totem pole but I hope I don't have to go any higher. Taking at night and it is knocking me out. Tried twice to take it in the morning as she prescribed and I stumble around all day. Maybe I'll get used to it. My son is on it and says he can't tell he's taking it. My son, by the way, had a heart attack over the last weekend but was in the hosital when it happened so he is prefectly fine now. They put in a stent and he is home now and driving today. They plan to do neurological tests on me but they can't get to me for 2 months so we're at a standstill. However, the Gabapenen is helping with the burning nerves so I can hang on. Thanks for all your interest. I hope all of you are doing well and seeing a light at the end of the tunnel. Emilyanne
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3 ReactionsJust thought I would give an update on my situation. I was supposed to meet with my doctor this afternoon to discuss the carpal tunnel condition that she diagnosed in both my hands at my last appointment. I had a blood test for C-Reactive Protein (CRP), S to check for inflammation and it was at 13.8 mg/L which I guess means my PMR is officially back out of remission. I'm back on 20 mg prednisone which I hope is only temporary. She called and cancelled my appointment for today because she wants to schedule an EMG for the arms/hands and then proceed with surgery for the carpal tunnel in the wrists. Of course none of this is helping with the SFPN in my feet and legs - fortunately I just have the yucky numbness and a little tingling with no sharp pain. I am a little worried about the prednisone and it's possible affects on the neuropathy since I was on it for a few years when my PMR first started back in 2007. Hopefully we will all find an answer that works for us. Just have to keep thinking - left foot, right foot, left foot, right foot...
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4 ReactionsJim, you may be interested in reading this discussions about medical marijuana and CBD
- CBD https://connect.mayoclinic.org/discussion/cbd/
- Chronic pain and medical marijuana https://connect.mayoclinic.org/discussion/chronic-pain-2bd75e/
Thanks John and EmilyAnne for the updates on your respective situations.
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2 ReactionsLook at the prednisone this way, if it helps your symptoms and is used properly/judiciously take it as a blessing. Not easy to find meds that work.
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3 ReactionsThanks John - it really is a blessing that it works and I am thankful for that. I'm just hoping I don't have to be on for too long and I won't have as much trouble when I start reducing the dosage to see if I can get off of it. I know that 20 mgs is not a high amount so that is blessing number 2!. Now I'm waiting for the doctor to schedule the nerve tests for the arms/hands and get the surgeries for carpal tunnel on the schedule.
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Like -
Helpful -
Hug
1 ReactionI've had this for at least 10 years/ Gabapentin has made the 24/7 extreme tingling in my feet bearable & I'm grateful fpr it' Cause has not been determined I don't fall in any of the usual categories, and am told about 25 percent of cases cannot be traced to specific cause.
I now have Atrophie Blanche - no known effective treatment of ankle & foot - dpn't know if that's in this grroup - but would welcome info for pain relief -
- it's sometimes extreme & much worse than the pn pain.
/ Superwife
-
Like -
Helpful -
Hug
1 ReactionBecause the chemical GBD in Marijuana is known to be a good pain reliever without the "high". Are you shocked that I do not wish to live my last years with extreme pain?
Mayo diagnosed Idiopathic Peripheral Neuropathy. Their diagnosis is good enough for me. Please don't SHOUT!