MRI was useless detecting anything relevant for neuropathy in feet.

Posted by louise@lou @suzed, May 13, 2023

I was disgusted with results of MRI. The findings were slim: mild sesamoiditis, stress, arthritis, and artifact in little toe. That's all when I can barely walk? My sesamoid bone is hugely inflamed even with taking Pregabalin, and lidocaine patches don't help. My toes are numb (almost like frostbite) and I truly thought the MRI could pinpoint the damage as my last resort. My pain specialist hasn't been much help either in controlling or finding the root cause of peripheral neuropathy. Why is this SO difficult, and are there any caring and mindful doctors left who actually know what they're doing? Not in my case.

Interested in more discussions like this? Go to the Neuropathy Support Group.

Please find a highly experienced foot or ortho doc. I found out that pain clinics can only do so much for a few. (For doctors, they found themselves a pretty good gig there.😒) It sounds like you are, and have been way past the point of anything they can do for you. Also find out everything you can on line about your issue. Ya can't just trust the doctor like the old days. Good luck and speedy recovery!❤

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@suzed Ouch was the first word out of my mouth! And a head nod, as it seems we share several symptoms. I have had MRIs, too. In my situation, neuropsthy is the result of complications from multiple myeloma, and the spinal cord nerve sheath issues surrounding that. In the attached article, many different causes of the neuropathy are addressed. In my experience, many doctors fall back on what they are most familiar with, and have a difficult time looking beyond that.

Do you have any of the underlying causes the article states, that might be contributing to your distress?
Ginger
https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061

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Vitamin B injections have been a tremendous help for me. The lesser pain goes away, the severe pain is tolerable. Most injections give me relief for about 2 weeks, sometimes 3 days or 3 weeks. Vitamin B helps neals nerves and muscle. Having above normal Vitamin B levels will not hurt you. I have had no side effects.

My neuropathy started with the sensation of my feet being an inch off the ground, that was followed with walking on nails and painful muscle cramps that would last for several minutes. There were times when laying my heals on the bed or allowing the sheets to settle on my toes would hurt.

Then the real pain started; deep pain lasting for hours. It felt as though there were severve muscle cramps inside my leg bones or those bones were being broken and crushed. Gabapentin helped but it made me sleep 12 hours. My neurologist recommended vitamin B pills, they did little, the higher dose with injections has taken me from almost being in tears to discomfort instead of pain. It's not a cure or a 100% solution.

then the real pain started. My vitamin B levels were low normal, my neurologist recommnded vitamin B tablets

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@gingerw

@suzed Ouch was the first word out of my mouth! And a head nod, as it seems we share several symptoms. I have had MRIs, too. In my situation, neuropsthy is the result of complications from multiple myeloma, and the spinal cord nerve sheath issues surrounding that. In the attached article, many different causes of the neuropathy are addressed. In my experience, many doctors fall back on what they are most familiar with, and have a difficult time looking beyond that.

Do you have any of the underlying causes the article states, that might be contributing to your distress?
Ginger
https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061

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Hi Ginger, I have yet to learn underlying cause for peripheral neuropathy from my pain specialist, but was counting on the MRI since it: would have been able to delineate site of disease, assess severity, and identify cause of neuropathy. As I mentioned before, nothing was ascertained. Hopeless and inaccurate results, and I told the radiologist this.
Thanks for the article though.

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@celiak

Please find a highly experienced foot or ortho doc. I found out that pain clinics can only do so much for a few. (For doctors, they found themselves a pretty good gig there.😒) It sounds like you are, and have been way past the point of anything they can do for you. Also find out everything you can on line about your issue. Ya can't just trust the doctor like the old days. Good luck and speedy recovery!❤

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I think you're right about pain specialists, and shall find a good orthopedic surgeon instead. Appreciate your helpful comments.

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Sorry to hear what you are going through. First question: Was your MRI a Neuro-MRI? A Neuro-MRI is a special type of MRI for nerves. I also saw your question above about looking for a good orthopedic surgeon. Orthopedic surgeons do not operate on Peripheral Neuropathy. If there is a disc problem in your back, then maybe something could be done. What caused your Peripheral Neuropathy? Was it diabetes? If yes, keep your numbers down. I too am suffering like you. My toes are cramping as I write. I think I've tried mostly everything including out of pocket rip-offs. You need to find what specifically works for you to ease the pain and suffering. Easy to say but that's really all we can do. I pray for your pain to ease. I am also angry at my doctors, who have no solutions for this horrible pain caused by this incurable horrible disease. GOOD LUCK!!!

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@julkun

Sorry to hear what you are going through. First question: Was your MRI a Neuro-MRI? A Neuro-MRI is a special type of MRI for nerves. I also saw your question above about looking for a good orthopedic surgeon. Orthopedic surgeons do not operate on Peripheral Neuropathy. If there is a disc problem in your back, then maybe something could be done. What caused your Peripheral Neuropathy? Was it diabetes? If yes, keep your numbers down. I too am suffering like you. My toes are cramping as I write. I think I've tried mostly everything including out of pocket rip-offs. You need to find what specifically works for you to ease the pain and suffering. Easy to say but that's really all we can do. I pray for your pain to ease. I am also angry at my doctors, who have no solutions for this horrible pain caused by this incurable horrible disease. GOOD LUCK!!!

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Really appreciate your comments, and it wasn't a Neuro-MRI, just standard, but still thought it would detect damage. I don't have diabetes, and the pain specialist hasn't discovered root cause of peripheral neuropathy. But in 2021, an orthopedic surgeon performed revision surgery (for botched tailor's bunion) and it was after that, gradually over time, the peripheral neuropathy appeared which has halted 90% of my walking.
This pain specialist actually recommended an orthopedic surgeon which I thought was strange too. Passing the buck? I'm going to have him call me today for any other options. Very angry also about getting the run-around when my acute pain is so debilitating, I feel like a cripple when I used to be totally active, and enjoying life.

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@suzed

Really appreciate your comments, and it wasn't a Neuro-MRI, just standard, but still thought it would detect damage. I don't have diabetes, and the pain specialist hasn't discovered root cause of peripheral neuropathy. But in 2021, an orthopedic surgeon performed revision surgery (for botched tailor's bunion) and it was after that, gradually over time, the peripheral neuropathy appeared which has halted 90% of my walking.
This pain specialist actually recommended an orthopedic surgeon which I thought was strange too. Passing the buck? I'm going to have him call me today for any other options. Very angry also about getting the run-around when my acute pain is so debilitating, I feel like a cripple when I used to be totally active, and enjoying life.

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@suzed I will be interested to hear what you are told today. Will you come back and share with us, please?
Ginger

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He's going to try intravenous infusions of lidocaine. But then again, it's only temporary. I researched a bit, and found surgical nerve blocks for chronic pain, and may go that route. Has anyone had that for the foot?
Initially, I thought I was going to have spinal cord stimulation, but would involve a specialist my health insurance unfortunately doesn't cover.

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@suzed

Really appreciate your comments, and it wasn't a Neuro-MRI, just standard, but still thought it would detect damage. I don't have diabetes, and the pain specialist hasn't discovered root cause of peripheral neuropathy. But in 2021, an orthopedic surgeon performed revision surgery (for botched tailor's bunion) and it was after that, gradually over time, the peripheral neuropathy appeared which has halted 90% of my walking.
This pain specialist actually recommended an orthopedic surgeon which I thought was strange too. Passing the buck? I'm going to have him call me today for any other options. Very angry also about getting the run-around when my acute pain is so debilitating, I feel like a cripple when I used to be totally active, and enjoying life.

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Hope things are getting better but I forgot to mention that if you need to detect damage, you should go to a nerve specialist and have a nerve conduction test. It will tell you if your nerves are normal or not. Good luck!!!

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