Welcome @sheilahartnell, Sorry to hear that you have joined the neuropathy club but happy that you have found Connect, you are not definitely not alone. Not sure if you have started any treatments or what symptoms you have but there is a lot of patient experience here on Connect and many different discussions in the Neuropathy Support Group. Here's a link to the list of discussions - https://connect.mayoclinic.org/group/neuropathy/.
What symptoms do you have that bother you the most?
Welcome @sheilahartnell, Sorry to hear that you have joined the neuropathy club but happy that you have found Connect, you are not definitely not alone. Not sure if you have started any treatments or what symptoms you have but there is a lot of patient experience here on Connect and many different discussions in the Neuropathy Support Group. Here's a link to the list of discussions - https://connect.mayoclinic.org/group/neuropathy/.
What symptoms do you have that bother you the most?
Mea Culpa! Need to correct a previous post I made re: using R-Alpha Lipoic Acid to help PN.
I’m 86 and have been dealing with idiopathic, non-diabetic progressive PN in both feet and hands for about 10 years now.
Around last December I made a change adding three daily capsules of Dynamic Nerve to my daily regimen, primarily because of its 200 mg ALA content. Also increased my daily Life Extension 283 mg R-ALA to three capsules daily giving me a total of nearly 1500 mg daily. Simultaneously I noticed a small improvement in my PN which I credited to the ALA, perhaps an error. After three months of some PN relief, in mid-March the PN came roaring back with a vengeance, no change in supplements.
Last week, for another problem, I began a regimen of 40 mg of prednisone daily and surprisingly my PN began to recede again. Only then did I realize that I had done the exact same steroid treatment near the end of last year also about the same time as the ALA increase.
Conclusion…It may be either the prednisone alone (logical, should have figured that out) or in synergy with the ALA that has helped to slightly modify the PN
(now mostly just numbness but little pain) and it may only last three months after I stop the steroids but I’ll take it.
Sincerely hope this info is helpful and that my previous post didn’t mislead anyone. PN is a terrible disease and I find most neurologists only treat it by prescribing masking meds like Gabipentin, etc. that I won’t take. We can pray there will be a cure somewhere, somehow… Hopefully Mayo will find it for us.
Meanwhile we can be grateful just for life itself.
I developed neuropathy in my feet after being diagnosed with CML and being on medication. It is thought that the medication caused it. My feet are not totally numb but I do have trouble driving longer distances because the right foot cramps up and becomes number than it already is. I never had the pins and needles or burning. Basically it seems most neurologists simply accept that you have it and you are done. Instead I was sent to Pain Management where I was basically offered some medication or an implant. I have seen comments about light therapy but don't know if anything really helps the numbness. At night I often find that my feet feel really cold but are in fact warm and the discomfort goes up into my legs but I supposedly do have good circulation. I've heard that most neurologist dismiss any kind of treatment as trash and it is annoying that they really don't seem to want to find anything that actually works.
I am 63 and have had a MGUS caused by an M protein elevation which causes raised immune system activity because it is tricked into thinking something needs to be destroyed (diagnosed about 15 years ago). The result is progressive destruction of Myelin sheath and nerve due to the immune system attack. I have feet numbness some leg issues and minor numbness in both arms and hands.
I still have strength and balance. My diet is predominantly healthy. Alcohol and sugar cause inflammation which temporarily elevates the side effects.
My neuropathy is incurable so I manage my health and exercise to give me the best quality of life I can achieve.
I am exploring Rituximab and previously was in a trial for Calquence.
Anyone with neuropathy needs a solid partnership with a neurologist and a hemotologist for a treatment plan IMO.
I have Peripheral Neuropathy, possibly due to kidney disease, yet am a three-year transplant recipient. i have been prescribed Lyrica, divalproex, velafaxcine, and recently Buspirone. the Lyrica has worked the best, yet last year, I started experiencing pain at bedtime that disrupts my sleep. I'm under the care of a pain clinic at Emory, and it seems we are going down the list of meds. We discussed nerve stimulation behind the knee, which involves surgery and gives electrical impulses to trick the brain. Has that been something you have explored?
Can't find any one who can help. 3 different neurologist in 18 months. Gabapentin offered for sleeping 300mg . Sleep 2 hrs wake with burning hot legs mainly underside knees down. Very frustrating.
I started on 50mg of Lyrica as needed, then increased to 75, 100, 150, and now at 200mg, the maximum dosage. i am now experiencing pain at night that disrupts my ability to fall asleep. does the Tramadol help eliminate the pain for you?
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Welcome @sheilahartnell, Sorry to hear that you have joined the neuropathy club but happy that you have found Connect, you are not definitely not alone. Not sure if you have started any treatments or what symptoms you have but there is a lot of patient experience here on Connect and many different discussions in the Neuropathy Support Group. Here's a link to the list of discussions - https://connect.mayoclinic.org/group/neuropathy/.
What symptoms do you have that bother you the most?
Numbness in feet spreading up my legs. Affects my balance.
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2 ReactionsHave you tried any exercises to help with your balance?
any exercise is walking and physical work-with care. I have to be careful that I don't trip or fall.
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1 ReactionWhen I was on prednisone for something else my numbness decreased considerably
I developed neuropathy in my feet after being diagnosed with CML and being on medication. It is thought that the medication caused it. My feet are not totally numb but I do have trouble driving longer distances because the right foot cramps up and becomes number than it already is. I never had the pins and needles or burning. Basically it seems most neurologists simply accept that you have it and you are done. Instead I was sent to Pain Management where I was basically offered some medication or an implant. I have seen comments about light therapy but don't know if anything really helps the numbness. At night I often find that my feet feel really cold but are in fact warm and the discomfort goes up into my legs but I supposedly do have good circulation. I've heard that most neurologist dismiss any kind of treatment as trash and it is annoying that they really don't seem to want to find anything that actually works.
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Like -
Helpful -
Hug
1 ReactionI have Peripheral Neuropathy, possibly due to kidney disease, yet am a three-year transplant recipient. i have been prescribed Lyrica, divalproex, velafaxcine, and recently Buspirone. the Lyrica has worked the best, yet last year, I started experiencing pain at bedtime that disrupts my sleep. I'm under the care of a pain clinic at Emory, and it seems we are going down the list of meds. We discussed nerve stimulation behind the knee, which involves surgery and gives electrical impulses to trick the brain. Has that been something you have explored?
Can't find any one who can help. 3 different neurologist in 18 months. Gabapentin offered for sleeping 300mg . Sleep 2 hrs wake with burning hot legs mainly underside knees down. Very frustrating.
Sorry I am not diabetic with this situation I posted above.
Swamp Lady
I started on 50mg of Lyrica as needed, then increased to 75, 100, 150, and now at 200mg, the maximum dosage. i am now experiencing pain at night that disrupts my ability to fall asleep. does the Tramadol help eliminate the pain for you?