John, Volunteer Mentor | @johnbishop | May 19, 2021
Hello @biro62, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Ah, the question that everyone wants to know what the answer is. A lot of us have shared our neuropathy journey in another discussion which may be a good place for you to start looking what experiences others have shared.
Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.
How long have you been dealing with peripheral neuropathy?
Hi. I have peripheral neuropathy from a spinal surgery 4 weeks ago. I have severe pain in both feet now. Can't tolerate anthing touching my feet. Sheets, sox. Nothing! Opioids only do so much. Can't wear shoes, so don't go far. Looking for insight.
Hi. I have peripheral neuropathy from a spinal surgery 4 weeks ago. I have severe pain in both feet now. Can't tolerate anthing touching my feet. Sheets, sox. Nothing! Opioids only do so much. Can't wear shoes, so don't go far. Looking for insight.
Hello @mrscurious, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Compressed or pinched nerves in the spinal cord can cause neuropathic pain and other symptoms. Since your spinal surgery is recent, have you discussed your symptoms with your surgeon to see if there is anything additional they can do?
Hello @mrscurious, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Compressed or pinched nerves in the spinal cord can cause neuropathic pain and other symptoms. Since your spinal surgery is recent, have you discussed your symptoms with your surgeon to see if there is anything additional they can do?
Hi @johnbishop I went to my surgeon this morning. He said this is not a pinched nerve in my back, it's more of an issue of my blood vessels not opening and closing as they should. I do have mixed connective tissue disease, but if he calls it peripheral neuropathy, why does he then say it's my blood vessels?
Hi @johnbishop I went to my surgeon this morning. He said this is not a pinched nerve in my back, it's more of an issue of my blood vessels not opening and closing as they should. I do have mixed connective tissue disease, but if he calls it peripheral neuropathy, why does he then say it's my blood vessels?
@mrscurious, There is another discussion you may want to join in since you mentioned you also have mixed connective tissue disease and the surgeon mentioned blood vessels not opening and closing normal. The blood vessels supply the peripheral nerves and if they aren't working it could be Vasculitis. Did your surgeon suggest seeing a pulmonologist?
Hello @biro62, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Ah, the question that everyone wants to know what the answer is. A lot of us have shared our neuropathy journey in another discussion which may be a good place for you to start looking what experiences others have shared.
Eight years ago I took a step down and landed on my left heel. It felt like an electric shock going through my body from foot to head. Two days later I couldn’t straighten out my left knee without terrible pain. Had two epidurals and that was gone. Then about 4 to 6 weeks later I started getting tingling in my lower legs and feet. Left leg worse but the right one is catching up. When I am on my feet I hardly know I have it. But when I change planes it starts up again before mostly fading. Going to bed at night is generally terrible but again it fades. Sometimes they feel like they are wrapped tightly. The skin down there feels fairly numb. Down south a few years ago I got bitten by five fire ants on my ankle. No reaction, itching, or festering.
Very unusual if you’ve ever had a bite by one. My back hasn’t been very good for 40 years but it’s a minor problem compared to this
Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.
How long have you been dealing with peripheral neuropathy?
There is actually an official diagnosis now for chemo induced peripheral neuropathy. Is yours from chemo or something else? There are prescription meds that work for some & also have some unpleasant side effects for some. My husband takes Gabapentin and has no problem with it. I tried it, and it did help some, but I was constantly dizzy. It was a major problem if I got up in the middle of the night. It did not improve enough to put up with the side effect.
What kinds of issues are you dealing with? I understand it can be very different from one person to the next. Whatever, it is uncomfortable, can certainly cause us to be unsure on our feet and be very frustrating. I hope you find something that helps. I am 3 years out from taking Taxotere, which is what caused mine. It is better but still a pretty major issue. I have it in both feet and both hands.
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Has the Mayo clinic cracked the code for neuropathy
Hello @biro62, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Ah, the question that everyone wants to know what the answer is. A lot of us have shared our neuropathy journey in another discussion which may be a good place for you to start looking what experiences others have shared.
Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
Can you share a little more about your neuropathy symptoms and diagnosis?
Hi. I have peripheral neuropathy from a spinal surgery 4 weeks ago. I have severe pain in both feet now. Can't tolerate anthing touching my feet. Sheets, sox. Nothing! Opioids only do so much. Can't wear shoes, so don't go far. Looking for insight.
Hello @mrscurious, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Compressed or pinched nerves in the spinal cord can cause neuropathic pain and other symptoms. Since your spinal surgery is recent, have you discussed your symptoms with your surgeon to see if there is anything additional they can do?
Hi @johnbishop I went to my surgeon this morning. He said this is not a pinched nerve in my back, it's more of an issue of my blood vessels not opening and closing as they should. I do have mixed connective tissue disease, but if he calls it peripheral neuropathy, why does he then say it's my blood vessels?
@mrscurious, There is another discussion you may want to join in since you mentioned you also have mixed connective tissue disease and the surgeon mentioned blood vessels not opening and closing normal. The blood vessels supply the peripheral nerves and if they aren't working it could be Vasculitis. Did your surgeon suggest seeing a pulmonologist?
- Possible MCTD and Vasculitis: https://connect.mayoclinic.org/discussion/possible-mctd-and-vasculitis/
Here's a Mayo Clinic YouTube video that might be helpful - Vasculitis: What you need to know
not that I know of. As far as my doctors are concerned IVIG is not an option
Eight years ago I took a step down and landed on my left heel. It felt like an electric shock going through my body from foot to head. Two days later I couldn’t straighten out my left knee without terrible pain. Had two epidurals and that was gone. Then about 4 to 6 weeks later I started getting tingling in my lower legs and feet. Left leg worse but the right one is catching up. When I am on my feet I hardly know I have it. But when I change planes it starts up again before mostly fading. Going to bed at night is generally terrible but again it fades. Sometimes they feel like they are wrapped tightly. The skin down there feels fairly numb. Down south a few years ago I got bitten by five fire ants on my ankle. No reaction, itching, or festering.
Very unusual if you’ve ever had a bite by one. My back hasn’t been very good for 40 years but it’s a minor problem compared to this
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1 ReactionHave dealing with it since 2017 please I need help
Please has anyone gotten the treatment for peripheral neuropathy please I need help