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Cannot find the cause of neuropathy after multiple tests
My husband has very bad neuropathy that seems to be getting worse. We've put out a few thousand in drs, tests, specialist. We have no known cause and he is fairly young at only 53 years old. Hes not overweight, hes not underweight either. Any suggestions? Bloodwork is all good. We currently have a lapse in medical coverage because he had to retire from his job. Where do we go from here? As his wife and only caregiver I can see his frustration growing, He's angry, frustrated, cranky and in horrible pain both legs, knees, calves, feet and toes. He's starting to feel it in his left arm, wrist, hand, fingers. I don't know how else to help him. We've tried different creams, sprays, roll on's, supplements, and even got a vibration exercise board, hot tub and a treadmill. Nothing is working. Please help!
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Are you planning to visit Mayo for a consultation?
Hello @suepooh53114, I would like to add my welcome to Connect along with @malebreastcancer47 and others. Really sorry to hear your husband is having a difficult time with his neuropathy. I know you mentioned you have seen a lot of doctors and specialists along with many tests without a specific cause for your husband's neuropathy symptoms.
Did his doctors prescribe any medications for the nerve pain? Have you considered seeking a second opinion at a teaching hospital or major health facility like Mayo Clinic?
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2 Reactions@malebreastcancer47
Yes
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1 ReactionFirst, I am sorry to hear about the situation you and your husband are in, has to be frustrating. It would seem to me that the primary goal at this point is to get the pain under control, and perhaps a primary doc or neuro doc can prescribe pain meds for a trial period of 30 to 45 days to see if the pain can be reduced. This would likely reduce his frustration and anger as well. Again, sorry to hear what you're both going through and John @johnbishop made an excellent point regarding Mayo. I went to Mayo in MN and got the answers I needed. A referral might help in that area and having any and all prior test results is helpful as well. Best to your husband and you. Ed
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4 ReactionsI'm so sorry to hear your husband is suffering. I'm 64 and was just diagnosed. They don't know if it's pre-diabetic perephial neuropathy or not. I can't get in to see a neurologist until February. We live in a small town. Gabapentin did not work for me, it made me feel horrible. I'm on 30mg of Amitriptyline, but just started that, so time will tell. Hope you get some help. I'm šš some kind of medicine comes around for all of us.
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4 Reactions@nancysav In what way did Gabapentin make you feel horrible? I'm suspecting it may be causing me my night-time pain and sleeping problems.
Hello,
So sorry about what your husband and off course you too are going through.
Neuropathy is a tough condition to deal with. If doctors were unable to find the cause after all the tests, your husband might have what almost 30% of neuropathy patients have and that is called idiopathic neuropathy. It means the cause is unknown and very difficult to pinpoint. I am one of those. My condition has definitely progressed since it started. Iām now seeing a new neurologist and going through different types of tests such as genetic blood test and a lip biopsy. Iām not sure what will be found.
I have also just had the trial spinal cord stimulator taken out 3 days ago and still trying to decide on whether or not to go for a permanent one. It did help with my Complex Regional Pain Syndrome in my right shoulder and arm but did nothing for the lower part of my body. We shall see.
Iām by no means suggesting that your husband should try anything on his own but should definitely check with his doctors prior to trying anything. Side effects can be devastating.
Best of luck and best wishes to both of you.
Take care and try to stay positive and have a serene weekend despite everything,
gus
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2 ReactionsI am also sorry to hear about your issues with neuropathy. I have ideopathic neuropathy and they keep saying that means they do not know the cause...My response is "are you really looking for it"? The answer in my case after 3 neurologists is NO. I am 76 years old take no meds, no comorbidities, excellent blood tests. My only issues are osteoporosis osteoarthritis and neuropathy. Of all of the issues the WORST is this neuropathy. It started in 2024 and I have NOT found any neurologist who is digging for the answers. I am in BOSTON not in the middle of nowhere! I am going to MGH and Newton Wellesley not some tiny hometown hospital. It started in my toes and is now up to my knees. I am so discouraged.
Have doctors looked at the spine, where nerves travel from the brain. Is something being compressed, which overtime causes the neuropathy?
My dad was a scientist in orthopedics for 38 yrs, focusing on the spine. I learned a LOT of what the spine does. He would always say, exercise in a pool, so gravity isnāt pulling you down and donāt run as this impacts your spine, knee, in the long run. We all now sit a lot, I am sure this is also an attributing factor.
Having breast cancer and a Mayo patient, I participate in 3 Mayo research studies. I am not looking for a cure for cancer but what steps can we take to lessen cancer. No crazy mushrooms or odd solutions.
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