1. < Neuropathy

Nerve damage and pain that isn’t neuropathy but feels like it.

Posted by Nemo1 @nemo1, Apr 11, 2023

Hello.

For over three years I thought I had diabetic neuropathy. All the signs and symptoms, burning, stinging, numb areas, boring sensation. I was told I had it and have rec’d treatment of lyrica and lidocaine.

A recent EMG study showed severe chronic lumbosacral polyradiculopathy worse at L5 and S1 and chronic cervical polyradiculopathy that is more severe at C5 & C7.

I was told by my neuromuscular doctor she does not see neuropathy of my feet (yes in right ulnar…) I am blown away, thinking all this time there was nothing else I could do except keep blood sugar in check which it has been between 6 - 7 hba1c. I was told by another doctor that neuropathy usually flairs at 11. Her having said that and me also having bad spasms in: hamstrings, calves, feet and toes made me wonder if it was neuropathy. Foot drs and neuro’s tested feet, yes they said to neuropathy.

The upshot of this is there is something going on with me that they are trying to diagnose…pinpointing what exactly it is and how it can be treated. I have to have an mri lumbar and ct to evaluate benign thymoma with and without contrast. My exams are in may. The have no sooner appointments.

My doctor is good, the one I see now. I trust her. She is thorough and taking me seriously. I was referred and there was a min of four month wait. It’s a long time to not feel good having strange things happen.

From one minute it feels like a bee stinging. To other deeper boring pain. The muscle spasms in the balls of feet and toes are so stiff and tight I cannot walk heel to toe without pulling the muscles. I fear I’ll snap it, its so tight now and the toes feel like 2nd degree burns or worse, I have skin sensitivity that feels like I have a bad sunburn and it hurts to touch.

The question I am trying to ask, is this: being I don’t have neuropathy but severe nerve pain and damage does anyone have any experiences with this?

I cannot sleep with the lower back causing tingling in both legs. I also have a problem with balance and use a cane. I am working on having a railing installed in the hallway so I don’t fall down the stairs. I use the walls now.

Does anyone have any encouraging thoughts? Within two years I’ve not driven because I could not feel the pedel It’s gotten worse. I fear I will end up wheelchair bound. Yesterday my legs felt weak and shaky. The left gave out for a split second. I would have dropped if it “went”.

Has anyone been through this anything like this? I looked up polyradiculopathy and didn’t get a whole lot. I did get pub med but that stuff is too complex. If I’m in the wrong place could someone direct me.

Thank you.

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

sheila69wg | @sheila69wg | Apr 14, 2023
In reply to @julbpat "nemo1, I think you do have neuropathy, since that is defined as damage, disease, or dysfunction..." + (show)
@julbpat

nemo1, I think you do have neuropathy, since that is defined as damage, disease, or dysfunction of the peripheral nervous system. It sounds like the real question for you is what caused this. And it sounds like you are close to getting an answer to that question. Regardless, it sounds like it is not responding to the treatments you have, or it was responding, but is getting worse, as neuropathy tends to do.
Have you had skin biopsies to look at your nerves and define what type of damage they have? These are usually ordered by a neurologist, and are done on the ankle, above the knee, and upper thigh. This biopsy gives specific information that would clear up confusion about your specific neuropathy symptoms.

Jump to this post

Hi There I to have seen my Nero doctor to find out what is going on with me to sum it up I have no nerve damage. So I was sent to a pain mgt Dr who only deals with giving me shots and I been there and done that. The doctor wasn't listening to me. So now what? Do I have a neropanty problem or something else? Very discouraging because I am still suffering. What's next I don't know. Anymore. Sweating still going on, feeling dirty eyes problems Health Insurance company all they seem to care about is preventing them from using their Money restrictions. They want Sr. To die.

REPLY
1 reply
earlt | @earlt | Apr 14, 2023
In reply to @nemo1 "Hi Bjk3 I had an EMG on 4/7. It shows what I added below from the..." + (show)
@nemo1

Hi Bjk3

I had an EMG on 4/7. It shows what I added below from the report from my doctor… chronic severe lumbosacral polyradiculopathy, cervical polyradiculopathy especially at: L5, S1, C5, C7 plus other notes listed in pic below.
So the mri, ct then maybe a lumbar puncture.
Believe me, I was in shock to learn no neuropathy in feet. Hard to believe. I’m in so much pain its unreal.

Jump to this post

Hi, Bjk3
I have the same problem. I had blood test, sonogram and am EMG. I had an MRI before all of this. It showed bulging disc, a herniated disc and a collapsed L-5 to S-1. I went to 2 spine surgeons. Both said they didn't see pinched nerve and didn't offer to do anything to fix my back.
I'm in Tricare for life. I guess they didn't think they would get enough money. Your problem is probably in your back. My feet swell. Especially on the bottom and my toes swell. when I get up in the morning the swelling is gone except my toes. It gets really bad when I'm driving.
I've given up on doctors. Most of them are idiots. My Neurologist us a good man. He did all he could to find out what was wrong.
Hanf in there,
Conrad

REPLY
1 reply
Nemo1 | @nemo1 | Apr 14, 2023
In reply to @earlt "Hi, Bjk3 I have the same problem. I had blood test, sonogram and am EMG. I..." + (show)
@earlt

Hi, Bjk3
I have the same problem. I had blood test, sonogram and am EMG. I had an MRI before all of this. It showed bulging disc, a herniated disc and a collapsed L-5 to S-1. I went to 2 spine surgeons. Both said they didn't see pinched nerve and didn't offer to do anything to fix my back.
I'm in Tricare for life. I guess they didn't think they would get enough money. Your problem is probably in your back. My feet swell. Especially on the bottom and my toes swell. when I get up in the morning the swelling is gone except my toes. It gets really bad when I'm driving.
I've given up on doctors. Most of them are idiots. My Neurologist us a good man. He did all he could to find out what was wrong.
Hanf in there,
Conrad

Jump to this post

With everything you have going on in your spine, it sounds like you need intervention. Did your neuro refer you to those “surgeons”? I would not give up. There must be someone who can advocate for you. A social worker, someone on the inside? Did you bring all your reports to the spine drs? I used to not speak up for myself with drs. Now i do. I can’t afford not to. Many years ago I had a dr that would not refer out and my hmo would not let me visit specialists unless I had a referral. She was criminal for doing that. Have you asked your health insurance who the have in there program who could help you? Its horrible how they treated you. I hope you get help.

REPLY
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Apr 14, 2023
In reply to @nemo1 "Hi Bjk3 I had an EMG on 4/7. It shows what I added below from the..." + (show)
@nemo1

Hi Bjk3

I had an EMG on 4/7. It shows what I added below from the report from my doctor… chronic severe lumbosacral polyradiculopathy, cervical polyradiculopathy especially at: L5, S1, C5, C7 plus other notes listed in pic below.
So the mri, ct then maybe a lumbar puncture.
Believe me, I was in shock to learn no neuropathy in feet. Hard to believe. I’m in so much pain its unreal.

Jump to this post

@nemo1 I’m looking at this from a different viewpoint because I have experienced and had surgery for pain caused by a spine condition. Your reports indicate radiculopathy which is compression of nerves as they leave the spinal cord. This type of issue is treated by decompression surgery to free up the bone growth or ruptured discs that cause pressure. Once a disc herniates, it causes inflammation and overgrowth of bone, essentially arthritis in the spine. This often does cause sharp burning or electric pain when nerves are compressed. The report also mentioned compressed nerves in the cubital tunnel which is in the elbow. That can add more pain, and it is possible to have more than one compression area on the same nerve. Have you had an opinion from a spine surgeon about your pain?

REPLY
3 replies
Nemo1 | @nemo1 | Apr 14, 2023
In reply to @jenniferhunter "@nemo1 I’m looking at this from a different viewpoint because I have experienced and had surgery..." + (show)
@jenniferhunter

@nemo1 I’m looking at this from a different viewpoint because I have experienced and had surgery for pain caused by a spine condition. Your reports indicate radiculopathy which is compression of nerves as they leave the spinal cord. This type of issue is treated by decompression surgery to free up the bone growth or ruptured discs that cause pressure. Once a disc herniates, it causes inflammation and overgrowth of bone, essentially arthritis in the spine. This often does cause sharp burning or electric pain when nerves are compressed. The report also mentioned compressed nerves in the cubital tunnel which is in the elbow. That can add more pain, and it is possible to have more than one compression area on the same nerve. Have you had an opinion from a spine surgeon about your pain?

Jump to this post

Hi Jennifer,

I am still being worked up by the NM Doctor. MRI, CT and possibly lumbar puncture depending on what the MRI shows. She is looking to see if its compression or inflammation. It’s polyradiculopathy and the year before I was told it was in my back and lumbo sacral regular Radiculopathy. She didn’t test the arm and only did one leg. I changed doctors. I think I will get answers from her. My current dr could not comment on therapies until the other tests come in. I was jumping the gun after the EMG. Asking questions she could not yet answer. Thank you. I suppose if it is a condition causing the inflammation we shall see. For polyradiculopathy there was not a whole lot of info except some that said it was caused my a demyelination of the nerves. Another said Guillian Bare Syndrome. I am not sure this is degeneration but the MRI should show something. Last mri from august of last year showed multiple areas of concern but degeneration at L5 and they found autoimmune psoriatic arthritis in sacrum. So, that might correspond with the S1 radiculopathy. Not sure. I will let you know what the mri shows and what the doctor says next steps are. Last mri of lumbar did not include contrast. This one will.

REPLY
1 reply
Nemo1 | @nemo1 | Apr 14, 2023
In reply to @jenniferhunter "@nemo1 I’m looking at this from a different viewpoint because I have experienced and had surgery..." + (show)
@jenniferhunter

@nemo1 I’m looking at this from a different viewpoint because I have experienced and had surgery for pain caused by a spine condition. Your reports indicate radiculopathy which is compression of nerves as they leave the spinal cord. This type of issue is treated by decompression surgery to free up the bone growth or ruptured discs that cause pressure. Once a disc herniates, it causes inflammation and overgrowth of bone, essentially arthritis in the spine. This often does cause sharp burning or electric pain when nerves are compressed. The report also mentioned compressed nerves in the cubital tunnel which is in the elbow. That can add more pain, and it is possible to have more than one compression area on the same nerve. Have you had an opinion from a spine surgeon about your pain?

Jump to this post

I hope there is a remedy for this.

REPLY
Nemo1 | @nemo1 | Apr 15, 2023
In reply to @jenniferhunter "@nemo1 I’m looking at this from a different viewpoint because I have experienced and had surgery..." + (show)
@jenniferhunter

@nemo1 I’m looking at this from a different viewpoint because I have experienced and had surgery for pain caused by a spine condition. Your reports indicate radiculopathy which is compression of nerves as they leave the spinal cord. This type of issue is treated by decompression surgery to free up the bone growth or ruptured discs that cause pressure. Once a disc herniates, it causes inflammation and overgrowth of bone, essentially arthritis in the spine. This often does cause sharp burning or electric pain when nerves are compressed. The report also mentioned compressed nerves in the cubital tunnel which is in the elbow. That can add more pain, and it is possible to have more than one compression area on the same nerve. Have you had an opinion from a spine surgeon about your pain?

Jump to this post

Thank you for that information. Surgery. I’m not sure how much of that decompression surgery would help in multiple areas??? I need something to kill the pain in the soles and tops of feet. Yesterday was brutal. Day by day it seems to be a little more difficult to get around. It hurts so badly, I can’t put on shoes. I have to wear fuzzy slippers around. We were supposed to go out for my sisters birthday. I can’t keep missing out on life because of this. It is extremely disruptive. I’m sorry for the pain you have endured. How was the decompression surgery? Did it relieve the pain and how long did it take to do that?

REPLY
jalcorn | @jalcorn | Apr 15, 2023
In reply to @nemo1 "Hi Jennifer, I am still being worked up by the NM Doctor. MRI, CT and possibly..." + (show)
@nemo1

Hi Jennifer,

I am still being worked up by the NM Doctor. MRI, CT and possibly lumbar puncture depending on what the MRI shows. She is looking to see if its compression or inflammation. It’s polyradiculopathy and the year before I was told it was in my back and lumbo sacral regular Radiculopathy. She didn’t test the arm and only did one leg. I changed doctors. I think I will get answers from her. My current dr could not comment on therapies until the other tests come in. I was jumping the gun after the EMG. Asking questions she could not yet answer. Thank you. I suppose if it is a condition causing the inflammation we shall see. For polyradiculopathy there was not a whole lot of info except some that said it was caused my a demyelination of the nerves. Another said Guillian Bare Syndrome. I am not sure this is degeneration but the MRI should show something. Last mri from august of last year showed multiple areas of concern but degeneration at L5 and they found autoimmune psoriatic arthritis in sacrum. So, that might correspond with the S1 radiculopathy. Not sure. I will let you know what the mri shows and what the doctor says next steps are. Last mri of lumbar did not include contrast. This one will.

Jump to this post

Hi,
I was very interested in your report of symptoms and findings so far, as I too am waiting for results of an mri with contrast to
hopefully come up with a
reason for the numbness in my feet and lower legs, that is positional.
My last mri w/o contrast from six months ago showed some mild to moderate stenosis and disc protrusion at L-5 S-1, possible radiculopathy .
I haven’t driven my car in a year, and about one month ago had a sudden onset of joint pain in my arms, neck, shoulder and lower back along with extreme fatigue.
The blood test results showed a positive Ana , and an elevated TSH which my provider is questioning if there is something going on with my immune system.
She had me repeat all of the labs last week, and ordered an mri with contrast, which I completed yesterday.
So we shall see what comes of all of this. It’s
somewhat of a mystery that all these folks have
these weird symptoms with no medical history to support it?

REPLY
2 replies
Nemo1 | @nemo1 | Apr 15, 2023
In reply to @jalcorn "Hi, I was very interested in your report of symptoms and findings so far, as I..." + (show)
@jalcorn

Hi,
I was very interested in your report of symptoms and findings so far, as I too am waiting for results of an mri with contrast to
hopefully come up with a
reason for the numbness in my feet and lower legs, that is positional.
My last mri w/o contrast from six months ago showed some mild to moderate stenosis and disc protrusion at L-5 S-1, possible radiculopathy .
I haven’t driven my car in a year, and about one month ago had a sudden onset of joint pain in my arms, neck, shoulder and lower back along with extreme fatigue.
The blood test results showed a positive Ana , and an elevated TSH which my provider is questioning if there is something going on with my immune system.
She had me repeat all of the labs last week, and ordered an mri with contrast, which I completed yesterday.
So we shall see what comes of all of this. It’s
somewhat of a mystery that all these folks have
these weird symptoms with no medical history to support it?

Jump to this post

Hi Jalcorn,
Wow. So sorry you are enduring the pain and waiting for the diagnosis process to catch up with you. There are interesting parallels in our cases.

They recently found about 5 cysts and 2 nodules in my thyroid all under 1cm. I have to see endocrinologist to find out why and repeat ultrasound in a year. My labs have been ok within the thyroid situation.

I have nodules and cysts in thyroid, breast, bladder.

Me too. I stopped driving 11/21. When I could not feel the accelerator.

In my life I’ve had a positive ANA, low titer 1:40 speckled pattern. Ive also had history of suppressed tsh. The doc put me on 6 months of tapazole. He thought thyroid was hyper as result. He actually said mild intermitant Graves’ disease. I don’t include his evaluation in pt. History.

They dx’d me with autoimmune psoriatic arthritis in sacrum and it can move/attack any joint in body. I decided against the med doc wanted to give me due to its effects on immune system. If it starts to move I will reconsider.

I have a lot going on too. I can’t use Baclofen or any muscle relaxer because its causing urine retention and thats not good because it helped with the pain and I’m back to square one.

I’ve read when you have one autoimmune problem it’s possible to have more than one.

Did you have an EMG yet? FYI Don’t take anti inflammatories before a scan w/ contrast because it can alter results.

How was your CRP? i included in a picture the dermatomes of the body and thought it might help pinpoint what nerves affect what part of the body.

I hope your MRI gives you answers. I hope you get help for the pain. I spread the lidocaine all over bottoms of feet and just applying it with a q tip was agonizing. Walking is a real challenge. Waiting til may for mri is driving me crazy.

REPLY
1 reply
Nemo1 | @nemo1 | Apr 15, 2023
In reply to @jalcorn "Hi, I was very interested in your report of symptoms and findings so far, as I..." + (show)
@jalcorn

Hi,
I was very interested in your report of symptoms and findings so far, as I too am waiting for results of an mri with contrast to
hopefully come up with a
reason for the numbness in my feet and lower legs, that is positional.
My last mri w/o contrast from six months ago showed some mild to moderate stenosis and disc protrusion at L-5 S-1, possible radiculopathy .
I haven’t driven my car in a year, and about one month ago had a sudden onset of joint pain in my arms, neck, shoulder and lower back along with extreme fatigue.
The blood test results showed a positive Ana , and an elevated TSH which my provider is questioning if there is something going on with my immune system.
She had me repeat all of the labs last week, and ordered an mri with contrast, which I completed yesterday.
So we shall see what comes of all of this. It’s
somewhat of a mystery that all these folks have
these weird symptoms with no medical history to support it?

Jump to this post

I wonder if the shots/vaccines activated the immune system to overreact? It’s a thought that’s crossed my mind. I can’t tell you how many specialists I see. Its ridiculous.

REPLY
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