I have nine diabetic autonomic neuropathy, diagnosed 2 1/2 years ago plainly life-changing based on my symptoms, which are progressive, but are being maintained by medication. I understand that the future I anticipated is no longer in the future. I will live every day another and just adjustment learning to live with my symptoms. Some days are better than others my symptoms come and go they run the gamut. . Some days are better than others my symptoms come and go they run the gamut anywhere from tangling. to problem swallowing concentrating a bit with my balance arbitrary changes envision hearing bodily functions they come and go. They’re like bad relatives. They keep coming back even though you don’t want them to important to keep some sort of sense of humor and a positive outlook even in those dork moments they come and go to sharing on this website seems to help me by hopefully helping others who who are experiencing the effects of neuropathy to all have a good day and keep your head up and your spirits
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 would encourage you to seek out a good neurologist for a full work up exam including full blood work up. ( including vitamin deficiencies).
My symptoms started just like your over 10 yrs ago. My PCP & several podiatrists made there pitch but really didn’t have a clue.
Finally I found a very sharp neurologist. She nailed a diagnosis. Large fiber sensory poly-neuropathy.
I would encourage you to seek out a good neurologist for a full work up exam including full blood work up. ( including vitamin deficiencies).
My symptoms started just like your over 10 yrs ago. My PCP & several podiatrists made there pitch but really didn’t have a clue.
Finally I found a very sharp neurologist. She nailed a diagnosis. Large fiber sensory poly-neuropathy.
Yes, I'll get to work and find a neurologist. I'll need to go out of town for that, but our hospital shuttle will provide the ride. I drive locally around town but not long distances at fast speeds so I'm kind of limited.
I still believe my whole problem began with that final radiation treatment for anal cancer when my sacrum was fractured. (Proof: MRI) They pulled me off the machine because I passed out. And when I woke up with an IV in me, the nurse said I probably forgot to drink the water. In short, I let her have it and told her I did no such thing. I had three more days of radiation treatments left, but they discharged me early. That was in December 2013.
In August 2018, I moved to a Senior apartment dwelling and started walking on safe and solid sidewalks, without gravel or gutters to fall into, or speeding cars to dodge, and no threat of dogs running loose. I was in 7th heaven, until my hip joints started locking up on me, 1st my L than my R. This was in January 2019. I've kept records. I also use to walk at home with Leslie Sansones, Miracle Miles. She is amazing. Her timing is superb and she is an excellent health and fitness coach. I need to reconnect with Leslie, and also stay focused with Qi Gong.
BTW, I looked up large fiber sensory poly-neuropathy and it doesn't fit me. I have no loss of lower extremities. I walk barefoot every day and I have full coordination and balance in my lower extremities and no loss of sensation in my feet.
But no more self-diagnosis coming from this gal. I'm going to find a neurologist and finally obtain a professional point of view.
Salute and happy days to all of us. And may they find a cure for whatever ails us. Hugs, CB
I have nine diabetic autonomic neuropathy, diagnosed 2 1/2 years ago plainly life-changing based on my symptoms, which are progressive, but are being maintained by medication. I understand that the future I anticipated is no longer in the future. I will live every day another and just adjustment learning to live with my symptoms. Some days are better than others my symptoms come and go they run the gamut. . Some days are better than others my symptoms come and go they run the gamut anywhere from tangling. to problem swallowing concentrating a bit with my balance arbitrary changes envision hearing bodily functions they come and go. They’re like bad relatives. They keep coming back even though you don’t want them to important to keep some sort of sense of humor and a positive outlook even in those dork moments they come and go to sharing on this website seems to help me by hopefully helping others who who are experiencing the effects of neuropathy to all have a good day and keep your head up and your spirits
I've had knee replace in 2009 then the other in 2024. I have neuropathy since about 2005. Can you exercise the pain, numbness, pins and needles hands legs and feet away. Days are fair but agony is loss of balance and cannot walk without a walker or cane. Is there any hope?
I developed non diabetic neuropathy from long COVID. It has been a very difficult adjustment. I also have heavy legs syndrome and I just saw a long COVID Dr., and he has recommended I start a rehab program, specifically aimed at addressing these issues. I will also be starting 2 new drugs, one not FDA approved so I will be getting it froma compound pharmacy. Please ask me any questions you would like. Debra
I've had knee replace in 2009 then the other in 2024. I have neuropathy since about 2005. Can you exercise the pain, numbness, pins and needles hands legs and feet away. Days are fair but agony is loss of balance and cannot walk without a walker or cane. Is there any hope?
I read cut nerves from surgery regrow after a few months. Crushed nerves have damaged and or lost coating. I have my trigeminal nerve continually being damaged by a crossing artery pulsing on it. Am taking METHYLCOBALAMIN (B12) in the hope it's myelin can be restored a little each sleep. Seems to me u have a crushed knee nerve . Good luck.
I've had knee replace in 2009 then the other in 2024. I have neuropathy since about 2005. Can you exercise the pain, numbness, pins and needles hands legs and feet away. Days are fair but agony is loss of balance and cannot walk without a walker or cane. Is there any hope?
There is always hope. Believe that. Are you seeing a physical therapist?
I'm on the TENS crusade right now. I'll be receiving my TENS unit from Amazon today. TENS is an electrical stimulator that can help reduce pain, and because of that, I believe it can help with mobility: your mobility. There are many people at this group that use TENS with positive results. I suggest you search TENS here and read the messages. It's a hot topic right now. And I am so eager to try out my unit today and see if the neuropathy in my feet goes away, so I can walk and exercise with ease. Keep the faith. Hugs, CB
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I have nine diabetic autonomic neuropathy, diagnosed 2 1/2 years ago plainly life-changing based on my symptoms, which are progressive, but are being maintained by medication. I understand that the future I anticipated is no longer in the future. I will live every day another and just adjustment learning to live with my symptoms. Some days are better than others my symptoms come and go they run the gamut. . Some days are better than others my symptoms come and go they run the gamut anywhere from tangling. to problem swallowing concentrating a bit with my balance arbitrary changes envision hearing bodily functions they come and go. They’re like bad relatives. They keep coming back even though you don’t want them to important to keep some sort of sense of humor and a positive outlook even in those dork moments they come and go to sharing on this website seems to help me by hopefully helping others who who are experiencing the effects of neuropathy to all have a good day and keep your head up and your spirits
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6 ReactionsI would encourage you to seek out a good neurologist for a full work up exam including full blood work up. ( including vitamin deficiencies).
My symptoms started just like your over 10 yrs ago. My PCP & several podiatrists made there pitch but really didn’t have a clue.
Finally I found a very sharp neurologist. She nailed a diagnosis. Large fiber sensory poly-neuropathy.
-
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Helpful -
Hug
1 ReactionYes, I'll get to work and find a neurologist. I'll need to go out of town for that, but our hospital shuttle will provide the ride. I drive locally around town but not long distances at fast speeds so I'm kind of limited.
I still believe my whole problem began with that final radiation treatment for anal cancer when my sacrum was fractured. (Proof: MRI) They pulled me off the machine because I passed out. And when I woke up with an IV in me, the nurse said I probably forgot to drink the water. In short, I let her have it and told her I did no such thing. I had three more days of radiation treatments left, but they discharged me early. That was in December 2013.
In August 2018, I moved to a Senior apartment dwelling and started walking on safe and solid sidewalks, without gravel or gutters to fall into, or speeding cars to dodge, and no threat of dogs running loose. I was in 7th heaven, until my hip joints started locking up on me, 1st my L than my R. This was in January 2019. I've kept records. I also use to walk at home with Leslie Sansones, Miracle Miles. She is amazing. Her timing is superb and she is an excellent health and fitness coach. I need to reconnect with Leslie, and also stay focused with Qi Gong.
BTW, I looked up large fiber sensory poly-neuropathy and it doesn't fit me. I have no loss of lower extremities. I walk barefoot every day and I have full coordination and balance in my lower extremities and no loss of sensation in my feet.
But no more self-diagnosis coming from this gal. I'm going to find a neurologist and finally obtain a professional point of view.
Salute and happy days to all of us. And may they find a cure for whatever ails us. Hugs, CB
Andy,
We are survivors. And a positive attitude and sense of humor is what keeps us going. Kudos to you. Hope you feel better soon. Hugs, CB
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2 ReactionsI've had knee replace in 2009 then the other in 2024. I have neuropathy since about 2005. Can you exercise the pain, numbness, pins and needles hands legs and feet away. Days are fair but agony is loss of balance and cannot walk without a walker or cane. Is there any hope?
-
Like -
Helpful -
Hug
1 ReactionI developed non diabetic neuropathy from long COVID. It has been a very difficult adjustment. I also have heavy legs syndrome and I just saw a long COVID Dr., and he has recommended I start a rehab program, specifically aimed at addressing these issues. I will also be starting 2 new drugs, one not FDA approved so I will be getting it froma compound pharmacy. Please ask me any questions you would like. Debra
I read cut nerves from surgery regrow after a few months. Crushed nerves have damaged and or lost coating. I have my trigeminal nerve continually being damaged by a crossing artery pulsing on it. Am taking METHYLCOBALAMIN (B12) in the hope it's myelin can be restored a little each sleep. Seems to me u have a crushed knee nerve . Good luck.
There is always hope. Believe that. Are you seeing a physical therapist?
I'm on the TENS crusade right now. I'll be receiving my TENS unit from Amazon today. TENS is an electrical stimulator that can help reduce pain, and because of that, I believe it can help with mobility: your mobility. There are many people at this group that use TENS with positive results. I suggest you search TENS here and read the messages. It's a hot topic right now. And I am so eager to try out my unit today and see if the neuropathy in my feet goes away, so I can walk and exercise with ease. Keep the faith. Hugs, CB