Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016
@fleure

Well, I do have a lot to learn! I only know of 1 person who uses mm & he smokes its. A rub where it hurts…sounds good to me. Im having a lot to deal with & a lot of learning to do! Its like my body exploded with pains a few wks back. Im in the process of eliminating meds…and then?? Thanks 4 the info.

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Hi John, I’ve seen many specialists but none have been able to find the specific problem. Most tell me that I will have to live with the pain

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@fleure

Well, I do have a lot to learn! I only know of 1 person who uses mm & he smokes its. A rub where it hurts…sounds good to me. Im having a lot to deal with & a lot of learning to do! Its like my body exploded with pains a few wks back. Im in the process of eliminating meds…and then?? Thanks 4 the info.

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Have you seen a neurologist to see if there is nerve damage? The symptoms kind of sound like small fiber peripheral neuropathy which I have but in both legs and feet. I’ve never had the pain but just numbness. It started out in the toes for me and worked it’s way up into the calves below the knees. Have you seen the causes/information listed on the Mayo Clinic website? http://www.mayoclinic.org/symptoms/burning-feet/basics/causes/sym-20050809. Not sure if this is helpful but may help with future discussions with your doctors. Don’t give up! I think it’s important to be your own advocate and stay proactive. Treatments that work for some people may not work for others…and there are a lot of scams when it comes to getting rid of pain and numbness.

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Hi John, yes, I’ve seen a couple of Nuerologist but my problem started in 2008 with burning pain and numbness in my buttocks, both legs, and left. Had two lumbar laminectomy over the years that corrected most of my pain with the exception of burning pain and numbness in my left food. My Neutologist thinks I have a biomechanical problem in my left foot. Tomorrow I’m going to see an orthopedic doctor at our local University Health Department. I have orthodistts that doesn’t help my pain and I take Gabapentin and a topical cream that helps the pain. Just thought I’d see if anyone here has anything like mine. Thank you John. Bob

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@robertlclark

Hi John, yes, I’ve seen a couple of Nuerologist but my problem started in 2008 with burning pain and numbness in my buttocks, both legs, and left. Had two lumbar laminectomy over the years that corrected most of my pain with the exception of burning pain and numbness in my left food. My Neutologist thinks I have a biomechanical problem in my left foot. Tomorrow I’m going to see an orthopedic doctor at our local University Health Department. I have orthodistts that doesn’t help my pain and I take Gabapentin and a topical cream that helps the pain. Just thought I’d see if anyone here has anything like mine. Thank you John. Bob

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Thanks Bob. Hopefully you will get some answers tomorrow that will help. Also, hoping that someone else with similar symptoms will be able to provide some helpful information. Good luck with your appointment tomorrow. Please keep us updated if you can.

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Colleen, I have lost the site for the lady in South Africa who has a diagnosis of brain atrophy as my husband does Can you post that again for me. Noreen

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@howardjames

Colleen, I have lost the site for the lady in South Africa who has a diagnosis of brain atrophy as my husband does Can you post that again for me. Noreen

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Hello Noreen,

I did a bit of research and I believe you are talking about the previous discussion that you started called Cerebellum Brain Atrophy where you connected with another member from South Africa. Here is the link to that discussion, https://connect.mayoclinic.org/discussion/cerebellum-atrophy/.

If you have further questions, feel free to send me a personal message by clicking on my name and then clicking on the envelope symbol in profile. That way you can send me a message that is just between you and I if you have any additional questions of if I did not answer the question you were asking Colleen.

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@aliskahan

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?

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I have suffered with pn for 10 years.

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@aliskahan

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?

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Sounds crazy, but I plan to try it tonight. Thanks

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@martid

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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My arms hurt on the underneath side. Is that where your arms hurt?

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HI: I was diagnosed with peripheral neuropathy after spending 42 days in the hospital. While there I was unable to get out of bed and before I was released I had to learn how to walk again. I was also sent to a nursing home after being discharged. Several factors attributed to this condition, being confined to bed was one and being put on Amiodarone was another. I suffer severe pain on a daily basis and cannot tolerate pain meds as I can not stand being drugged. Even a quarter of a drug at 10 mg renders me useless.

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Hello Trish, I too suffer from strong pain almost daily. I have had this condition which started over 8 years ago. My problem is in my left leg and left foot and the pain increases when I walk or stand. I have not been hospitalized and I don’t use opiate meds. I have had two back surgeries and many tests, but no one can find a solution. I just find my pain is not regulated well with Gabapentin that I now take at 1600 mg/day. I find myself trying to get comfortable reading or watching TV to take my mind off the pain. I do pray to God to relieve my pain and I know he will find a solution for my pain. Thank you for letting me share my situation and I do pray for your pain relief. If anyone has a solution, please share.

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Thanks, Robert for your response. I don’t know anyone else with this condition. I found a little relief raising my left leg high on cushions if I’m laying about reading. It does help. But, then sleeping is an other story. Even the touch of the sheet can feel like a hammer blow. It is the strangest malady I have ever encountered. My PCP prescribed lidocaine ointment, it did absolutely nothing except smell out the bedroom. LOL I can’t and won’t use opiate meds either for they keep me disoriented and unsteady on my feet. I am on Xarelto for A-Fib and blood clots and when I have to go off the Xarelto for medical procedures or surgeries I suffer severe back pain. No one that I have spoken with has ever heard of this. I am trying to get out the word by writing to the manufacturer of the drug and the FDA but so far it is too soon for a response. I have told each of my doctor and nurses but no one else has ever heard of this before. (They can’t say that now, can they?) I was hoping to find some one else here who suffers from the same fate. I pray you find relief from your pain and want you to know that I more than appreciate your response. Maybe together we can find others who are in the same boat and have found some relief.

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