Axonal peripheral neuropathy: Finally, a diagnosis!

Hello...Yesterday I had the nerve study done on my legs. results are 1. Bilateral lower extremity peripheral neuropathy that effects the sensory and motor NCS. It is demyelinating and axonal in nature.
2.. Bilateral L5 -S1 chronic lumbar nerve root irritation/ chronic radiculopathy with expected changes on the EMG study of the lumbar paraspinal region after previous posterior spinal surgeries (5 to be exact).

So, in laymen's terms.... all the nerves in both legs are damaged. Next step is to get me in to see a Neurologist, as this is not within the scope of my Orthopedic Surgeon. I am waiting on a call to set up an appointment.
So, I had to come home and mentally unpacked everything I was told. You can imagine all the things whirling around in my brain, while trying to not over think this. The key words I tuned in on at the doctor's office was, Serious, its urgent you get in to Neurologist immediately (knowing the word immediately these days mean anything from two weeks to 3 months.) Now I know why I can't turn over in bed without screaming at night, why I can't lift my legs, why I feel as if I have lost muscle tone in my legs, and why I can no longer do my 4 mile walk every day. Eight months ago, I was able to do all these things and never skip a beat...then BOOM I can't do any of those things now. The most encouraging word I hear yesterday was my Ortho doctor saying to me "This will not be forever". Those words were worth gold to my ears. I sleep in the guest room just so my husband won't hear me screaming out so bad during the night....and yet there he is trying do anything to give relief that just does not come. It's every single night for the past 8 months. I'm so tired, worn out, but I am not depressed. I just keep seeing Jesus suffering unmercifully on the cross and compared to that I know I can deal with this.
I know this could be as simple as a vitamin B12 deficiency. U know there is a MR Neurography that can be done to actually get a closer look at the nerves and in the nerves.
I have always been the type of person that everything has an explanation. Not always an answer, but an explanation, a depth that can be looked deeply into. I also believe that part of a diagnosis and treatment is attitude and asking all the right questions and forcing a sit-down eye to eye conversation between doctor and patient. Never walk out the door wishing you had asked this question or that question. Walk out knowing all your questions were addressed. My Primary doctor is thrilled that I advocate well for myself. But if I don't, then who will.
In closing I will say that I just happened on this site, and was surprised at the number of people who are dealing with the same thing I am. It's great to have groups like this, sharing stories and what worked for them and what didn't. Nothing like a chat room where empathy is found and appreciated.

Hello...Yesterday I had the nerve study done on my legs. results are 1. Bilateral lower extremity peripheral neuropathy that effects the sensory and motor NCS. It is demyelinating and axonal in nature.
2.. Bilateral L5 -S1 chronic lumbar nerve root irritation/ chronic radiculopathy with expected changes on the EMG study of the lumbar paraspinal region after previous posterior spinal surgeries (5 to be exact).

So, in laymen's terms.... all the nerves in both legs are damaged. Next step is to get me in to see a Neurologist, as this is not within the scope of my Orthopedic Surgeon. I am waiting on a call to set up an appointment.
So, I had to come home and mentally unpacked everything I was told. You can imagine all the things whirling around in my brain, while trying to not over think this. The key words I tuned in on at the doctor's office was, Serious, its urgent you get in to Neurologist immediately (knowing the word immediately these days mean anything from two weeks to 3 months.) Now I know why I can't turn over in bed without screaming at night, why I can't lift my legs, why I feel as if I have lost muscle tone in my legs, and why I can no longer do my 4 mile walk every day. Eight months ago, I was able to do all these things and never skip a beat...then BOOM I can't do any of those things now. The most encouraging word I hear yesterday was my Ortho doctor saying to me "This will not be forever". Those words were worth gold to my ears. I sleep in the guest room just so my husband won't hear me screaming out so bad during the night....and yet there he is trying do anything to give relief that just does not come. It's every single night for the past 8 months. I'm so tired, worn out, but I am not depressed. I just keep seeing Jesus suffering unmercifully on the cross and compared to that I know I can deal with this.
I know this could be as simple as a vitamin B12 deficiency. U know there is a MR Neurography that can be done to actually get a closer look at the nerves and in the nerves.
I have always been the type of person that everything has an explanation. Not always an answer, but an explanation, a depth that can be looked deeply into. I also believe that part of a diagnosis and treatment is attitude and asking all the right questions and forcing a sit-down eye to eye conversation between doctor and patient. Never walk out the door wishing you had asked this question or that question. Walk out knowing all your questions were addressed. My Primary doctor is thrilled that I advocate well for myself. But if I don't, then who will.
In closing I will say that I just happened on this site, and was surprised at the number of people who are dealing with the same thing I am. It's great to have groups like this, sharing stories and what worked for them and what didn't. Nothing like a chat room where empathy is found and appreciated.

I too would like a name. A diagnosis other than idiopathic. Like you I found calmness here. And encouragement.
The question I still have for you.
Did the gaining of knowledge change any way a physician was treating you? Was the protocol any different after diagnosis?
You have been a encouraging and interesting read on these boards.
Thank you for the time you have given. I feel it was a personal gift of - you.
Treasure shared .
Regards
debbieo

Thanks Ray! From all my research, I thought that would be the answer. But in life, I have learned not to assume- usually the hard way.
This group inspires me in many ways. From calm- to trying another way to cope. Emotionally and physically. I do know, it brings my troubles into perspective resulting in thankfulness and a little more iron in my soul.
You’re a good communicator and mentor. Straight talker. I can value those words.
Best to you!
debbieo