Looking to connect with people who have non-diabetic neuropathy

Jake, well my friend and fellow victim of epilepsy, there is nothing wrong with your memory. Wow! I do recall making that comment about never knowing for sure, but I had to really tape my memory bank and as unfortunate as it is, there is a strong possibility we are both impacted by the meds which as of this month, I've now been on Dilantin for 53 years. No neurologist will ever agree with me that these meds could have been the cause of my PN.

Hi NJEd and Jake, I am part of your group with the issue of meds causing our neuropathy. Mine was probably caused by methylprednisolone which was prescribed for me by an ENT to treat my sinus infection. Only took it for two days but probably a huge mistake that I am now paying a huge price for. I must say that I have no pain--I do get a sensory feeling of weakness in my extremities which can be remedied with physical therapy. I am having some breathing issues which could be connected to autoimmunity--does anyone out there experience this. My PCP said my breathing was fine--he is dismissive of just about everything. I had also visited a cardiologist and he said my heart was okay after doing an EKG. The doctors never want to hear about natural remedies. There is a marriage between mds and Big Pharma. Where have all the Prell Shampoo and Secret Deodorant TV commercials gone.?Gone to Lyrica, Zymbalta everyone! By the way, I am sure the heat dome we had here in the Northeast was no walk in the park for the neuropathy crowd.

It is amazing that somewhere between 20 million and 30 million people in the US have some degree of PN. I've heard figures in the 25 million area more than once which is the likely scenario. Surely some not yet diagnosed, I have no doubt that some meds can be a contributing factor in causing PN. In 2013, I was given vancomycin in a hospital and some antibiotics are connected to PN. So, as stated before, how will we ever know.

I agree. And, I did get treated with antibiotics for my sinus infection, so perhaps, that, and not the medrol caused me to get PN. My cousin has some numbness in her feet--she is now using a cane because her legs feel wobbly. She never went to the doctor or took any medication. If you say there is between 20 and 30 million folk with this, then where is the lobby to make something happen--like a cure--or at least better treatments. I am now gun-shy with medicines--the side effects seem to be enormous. For me, physical therapy is the way to go. I am supported there--unlike at the doctors who seem to have the agenda to medicate and medicate again. I may try reflexology and acupuncture. Plus, my podiatrist is researching a new cream based on capsaicin which purports to ease pain in feet for three months. Lets hope summer is kind to us PN sufferers!

About two years ago I started having tingling and other sensations in my right foot, so I went to a podiatrist. He said I had radiculopathy, referred pain from my back to my feet. It affected the metatarsals which felt spongy or full. I have never had an official diagnosis of peripheral neuropathy to date. Yet my situation has escalated to mirror the symptoms I read about so much here at this group. I've had numerous xrays all over my lower extremities and I honestly can't remember all the findings. I know I have spotty areas of arthritis but you wouldn't know it to look at me. So when members of the group mention the type of neuropathy they have, I'm lost. I mean pain is pain, right? And everything I read about neuropathy points out that it just gets worse. And doctors can't figure it out. For once I'm at a lost for words because I really don't know what I'm talking about other than I have received a diagnosis of lumbar radiculopathy. So I guess the nerves in my damaged spine are the culprit. That's where it began. So what would you call that?

I agree. And, I did get treated with antibiotics for my sinus infection, so perhaps, that, and not the medrol caused me to get PN. My cousin has some numbness in her feet--she is now using a cane because her legs feel wobbly. She never went to the doctor or took any medication. If you say there is between 20 and 30 million folk with this, then where is the lobby to make something happen--like a cure--or at least better treatments. I am now gun-shy with medicines--the side effects seem to be enormous. For me, physical therapy is the way to go. I am supported there--unlike at the doctors who seem to have the agenda to medicate and medicate again. I may try reflexology and acupuncture. Plus, my podiatrist is researching a new cream based on capsaicin which purports to ease pain in feet for three months. Lets hope summer is kind to us PN sufferers!

Hi, @arcuri24 -
Just a word of caution concerning the cream. Years ago, my podiatrist prescribed a cream for the pain on the bottom of my feet (way before I was diagnosed with PN) and it was quite effective. BUT it made my feet so slippery when I stepped into my shower, that I literally couldn't use it. It was as if I was stepping into a petroleum jelly-covered floor, even though the cream didn't seem to have an oil type base. Evidently water causes some creams to become excessively slippery. Take care!