1. < Neuropathy

Cervical myelopathy mistaken for neuropathy

Posted by yojimbob @yojimbob, Nov 25, 2022

I have been told for almost 10 years I have neuropathy . It was relatively mild for the most part . Recently I had serious episode of electric shocks ( cattle prod like ) pains in legs . I had weakness, numbness , tingling constantly in my legs and feet . I went to the doctor and was given an increase in gabapentin and the addition of cymbalta . It helped quite a bit with the pain . I was resigned to the fact I had neuropathy and it was going to get worse over time .
All of this prompted me to see a neurologist . He ordered an MRI .
Guess what ? I don’t have neuropathy. My problem is Cervical Myelopathy . My back . The only good news is this condition can be helped with surgery in most cases .
I would advise anyone who has been diagnosed with neuropathy and NOT had an MRI to get one .

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

charlotte1944 | @charlotte1944 | Dec 1, 2022
In reply to @jenniferhunter "@yojimbob Kudos for your neurologist for doing the MRI. A neurologist is supposed to diagnose where..." + (show)
@jenniferhunter

@yojimbob Kudos for your neurologist for doing the MRI. A neurologist is supposed to diagnose where a nerve problem is coming from. It shouldn't have taken 10 years to find this out. I had a conversation with you about Drop Foot and told you I had that from cervical spinal cord compression back in September. You may want to go back and respond to your post now that you know the real cause of your symptoms.

Here was the link to your post:
https://connect.mayoclinic.org/comment/753339/
I also had trouble getting a correct diagnosis, and I did get to where I had electric shocks down my body if I bent my neck. Spine surgery to decompress my spinal cord resolved all of that.

Your post brings up a very good point to ask questions and keep asking questions. A doctor needs to pinpoint where the pain is coming from and not just treat it with pain killers. With all that being said now, have you been referred to a spine surgeon? I would suggest getting several opinions. I had a one level fusion at C5/C6 with no hardware. I only had spinal cord compression, and none at the nerve roots. Do you have any questions you would like to ask?

Jump to this post

I already posted that I had a 360 spinal fusion L4,5 and S1 with hardware. When I came out of surgery my right foot looked like a flipper all toes clumped together no strength on left side of my right foot. The toes are now separated but the big toe won’t move very limp. My surgeon said my MRI looked perfect and doesn’t understand whats going on but mentioned he might have been too aggressive in motor? Area.
Now he wants me to get s cervical MRI but I feel he is looking for a scapegoat Do u think cervical MRI will be beneficial?
Does anyone know about nerve grafting? My neurologist looked st my lumbar MRI a d said there was scarring at S1 level. My spine surgeon never mentioned it. I did not have neuropathy for over 11 months. My surgery
Was 7/13/2021.

REPLY
lewin | @lewin | Apr 12, 2023
In reply to @jenniferhunter "@yojimbob Yes, that was me, and thank you so much for your kind words. That means..." + (show)
@jenniferhunter

@yojimbob Yes, that was me, and thank you so much for your kind words. That means a lot to me to know how I helped you seek the correct diagnosis. Wow! Spine problems are just tricky because you can feel pain in a nerve and it could be generated anywhere along the path of the nerve. I knew my foot drop was caused by my spinal cord compression because it happened when my vertebrae were slipping a bit which effectively made the spinal canal smaller which put more pressure on my spinal cord, and when my physical therapist realigned my vertebrae again, the foot drop stopped until muscles spasms moved everything around again.

I also had foot drop right after the accident that caused the whiplash for about a month before it got better. That must have been some bruising to the spinal cord, but no one knew it at the time. When there is a compromised nerve, it is accompanied by weakness, and no amount of will power will overcome it. It was difficult to get a correct diagnosis. I actually found medical literature with cases like mine, and with that in hand, I contacted Mayo Clinic, and then had spine surgery with a great surgeon there.

It's nice to meet you too! You made my day! I am excited for you now that you know what is wrong. Choose carefully and find the best spine surgeon that you can. I hope you will come back and share what offers of help you get from surgeons, and you can ask me questions. It can be overwhelming, and I learned so much about spine surgery when I was still looking for a surgeon to help me. It will be a journey, but now you know where you're going.

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Jennifer,

I may have asked you this before, but who did you see at Mayo. I also have cervical neuropathy,feeling off balance, neck pain, and lower back pain. I also was diagnosed with severe small fiber neuropathy. What concerns me is that many say you have surgery and problems can reoccur two or three years later. I have lower back pain now legs hurt, and end stage arthritis in knees. Nobody can figure out what is going on and very frustrated with doctors.

REPLY
3 replies
honu95 | @honu95 | Apr 12, 2023

I have cervical stenosis and had an MRI but I didn’t have neuropathy when it was read. I wonder if I should get another one since my neck and arm pain is worse

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karibo999 | @karibo999 | Apr 13, 2023
In reply to @artscaping "Good evening dbeshears1, I just read your reply post and I will have to admit that..." + (show)
@artscaping

Good evening dbeshears1, I just read your reply post and I will have to admit that I was a bit concerned. In trying to interpret your contribution Debbie, I gather that you feel there just has to be a reason for your neuropathy other than Idiopathic. I just don't know what that might be. It can't be easy like diabetes or chemo. It is not understandable like Trauma from injuries or surgeries or heaven forbid some combination of the two.

That's what led to my SFN (small fiber neuropathy). And so I spend way too much time exploring my past accidents and the surgeries that put me back together again. Was it because of the 3 days I spent face down in a sling over the hospital bed in Dover trying to reduce the size of the concussion on the back of my head? Was it that first rear-end collision on the off-ramp in Pittsburg? I lost my son that day also. And there are several other accidents beginning at the age of 13 including that pretty horrendous fall down the mountain.

Our bodies are amazing and the result of complex materials used to create a body that may function for 100 years. Wear and tear are way too possible. I know you have read that 100% of human beings who experience aging are likely to encounter neuropathy of some kind before they die.

As other aging medical issues pop up more frequently these days, I am more likely to lump them all together. I just spent six days with my 3 and 5-year-old grandchildren. I see them twice a year. So we do puzzles, play iPad games and I read them our favorite pop-up books. This Thanksgiving I found everything just a bit more difficult. 1. Needed my new reading glasses. 2. Had to prop my neuropathic feet up on warm pillows. 3. Could only read a couple of their pop-up books before having to take a break. And, I did without my medical cannabis to avoid any mysterious behavior.

So.....would it be possible for you to tell me the essence of your concern?

May you be free, safe, and protected from inner and outer harm.
Chris

Jump to this post

Hello, I have read your information and would like to ask some questions. I come from Norway, and we are not clever at helping people with severe traumas. I see that you and I have experienced some of the same issues. Therefore, I would like to know what kind of surgeries you got and what kind of therapy. I have subluxation on C1 and all the way down, so my sight has been threatened for a long time. I am now offered a fusion by a specialist in Germany, as my life has been so bad over years. There are several issues after several accidents, as a result of incompetence in our country. Did you get help by Mayo-clinic or elsewhere? Thank you for your contribution and hoping you are well. Kind regards, Kari

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1 reply
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Apr 13, 2023
In reply to @lewin "Jennifer, I may have asked you this before, but who did you see at Mayo. I..." + (show)
@lewin

Jennifer,

I may have asked you this before, but who did you see at Mayo. I also have cervical neuropathy,feeling off balance, neck pain, and lower back pain. I also was diagnosed with severe small fiber neuropathy. What concerns me is that many say you have surgery and problems can reoccur two or three years later. I have lower back pain now legs hurt, and end stage arthritis in knees. Nobody can figure out what is going on and very frustrated with doctors.

Jump to this post

@lewin I think your question is related to spine care and about my spine surgeon at Mayo, Rochester. My surgeon is Jeremy Fogelson who did a C5/C6 cervical fusion. There are many good surgeons at Mayo, and I selected him because of information I found through one of his medical papers because I had similar symptoms. I had been turned down locally by 5 surgeons who didn't understand my symptoms because my case was a bit unusual. He works with a neurologist in the spine center there, and he examined and tested me first and sent his results to Dr. Fogelson.

REPLY
1 reply
bonniethompson1234 | @bonniethompson1234 | Apr 13, 2023
In reply to @lewin "Jennifer, I may have asked you this before, but who did you see at Mayo. I..." + (show)
@lewin

Jennifer,

I may have asked you this before, but who did you see at Mayo. I also have cervical neuropathy,feeling off balance, neck pain, and lower back pain. I also was diagnosed with severe small fiber neuropathy. What concerns me is that many say you have surgery and problems can reoccur two or three years later. I have lower back pain now legs hurt, and end stage arthritis in knees. Nobody can figure out what is going on and very frustrated with doctors.

Jump to this post

This sounds like me but I’ve only been diagnosed with peripheral neuropathy.

REPLY
lewin | @lewin | Apr 13, 2023
In reply to @jenniferhunter "@lewin I think your question is related to spine care and about my spine surgeon at..." + (show)
@jenniferhunter

@lewin I think your question is related to spine care and about my spine surgeon at Mayo, Rochester. My surgeon is Jeremy Fogelson who did a C5/C6 cervical fusion. There are many good surgeons at Mayo, and I selected him because of information I found through one of his medical papers because I had similar symptoms. I had been turned down locally by 5 surgeons who didn't understand my symptoms because my case was a bit unusual. He works with a neurologist in the spine center there, and he examined and tested me first and sent his results to Dr. Fogelson.

Jump to this post

Thanks Jennifer. Glad you are so much better.

REPLY
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Apr 14, 2023
In reply to @karibo999 "Hello, I have read your information and would like to ask some questions. I come from..." + (show)
@karibo999

Hello, I have read your information and would like to ask some questions. I come from Norway, and we are not clever at helping people with severe traumas. I see that you and I have experienced some of the same issues. Therefore, I would like to know what kind of surgeries you got and what kind of therapy. I have subluxation on C1 and all the way down, so my sight has been threatened for a long time. I am now offered a fusion by a specialist in Germany, as my life has been so bad over years. There are several issues after several accidents, as a result of incompetence in our country. Did you get help by Mayo-clinic or elsewhere? Thank you for your contribution and hoping you are well. Kind regards, Kari

Jump to this post

Good evening @karibo999, it is great to meet you. I don't think I have ever met anyone from Norway. However, I live in Central MN and many folks are from Scandinavia.

You have asked me about the surgeries I have had. All of my surgeries except for my Caesarian with my daughter, have been orthopedic surgeries. It started when I was 13.....fell doing a roller skate spin with a young man. Long recovery and ankle surgery 4 years later. Let's see....3 spine surgeries. I was only 29 for the first one......then a laminectomy a few years later. Good yoga instructors and personal trainers have made that series of surgeries last a lifetime. I spent years trekking (12-15 miles a day) in Europe, Canada, and the US. Several toe surgeries after tripping over sprinklers and puppy dogs. Four shoulder surgeries including a reverse replacement. Fell down the mountain and had several elbow fractures. Are you still with me.....then came the TKRs (Total Knee Replacements).....the final one just last year. Thumb joints have been replaced, and to top it off had thoracic spine surgery with titanium blocks to hold everything together after a dangerous fall. Was rear-ended several times which led to some surgeries and the loss of my infant.

Is there anything else that would help you with our current issues? You mention incompetence in your country. You know...we have that issue in America. And remember....technology makes these medical procedures much better all the time. My thanks go to France where reverse shoulder surgery was developed.

Do you have other specific issues? I will help where I can if they have been part of my medical life.

May you be free of suffering and the causes of suffering.
Chris

REPLY
piross1528 | @piross1528 | Apr 28, 2023
In reply to @jenniferhunter "@yojimbob Kudos for your neurologist for doing the MRI. A neurologist is supposed to diagnose where..." + (show)
@jenniferhunter

@yojimbob Kudos for your neurologist for doing the MRI. A neurologist is supposed to diagnose where a nerve problem is coming from. It shouldn't have taken 10 years to find this out. I had a conversation with you about Drop Foot and told you I had that from cervical spinal cord compression back in September. You may want to go back and respond to your post now that you know the real cause of your symptoms.

Here was the link to your post:
https://connect.mayoclinic.org/comment/753339/
I also had trouble getting a correct diagnosis, and I did get to where I had electric shocks down my body if I bent my neck. Spine surgery to decompress my spinal cord resolved all of that.

Your post brings up a very good point to ask questions and keep asking questions. A doctor needs to pinpoint where the pain is coming from and not just treat it with pain killers. With all that being said now, have you been referred to a spine surgeon? I would suggest getting several opinions. I had a one level fusion at C5/C6 with no hardware. I only had spinal cord compression, and none at the nerve roots. Do you have any questions you would like to ask?

Jump to this post

Hey! I am wondering if I have that. I have crazy ithing a stabbing all through out my legs. I am really wondering if it is myelopathy now. My neuro thinks it is SFN though. But my biopsy is negative and the I just was diagnosed with congenital cervical spinal stenosis and have a herniated disc there! But neither neuro nor spinal surgeon have mentioned myelopathy. Can you tell me more about the symptoms in your legs?? Thank you!

REPLY
leema | @leema | Apr 29, 2023
In reply to @lewin "Jennifer, I may have asked you this before, but who did you see at Mayo. I..." + (show)
@lewin

Jennifer,

I may have asked you this before, but who did you see at Mayo. I also have cervical neuropathy,feeling off balance, neck pain, and lower back pain. I also was diagnosed with severe small fiber neuropathy. What concerns me is that many say you have surgery and problems can reoccur two or three years later. I have lower back pain now legs hurt, and end stage arthritis in knees. Nobody can figure out what is going on and very frustrated with doctors.

Jump to this post

Almost 80 years old: Was diagnosed with Lyme disease 20 years ago (after seeing a bazillion Drs)...and treated with antibiotics off and on for a few years and when I felt relapses. More recently have developed arthritis and pain in most bones including some cervical degeneration. My pain patterns are similar to yours and in early episodes was diagnosed with small fiber neuropathy. Also episodes of instability where I lose equilibrium and sort of keel over. Also bowels not moving regularly without help.

REPLY
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