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Ray Kemble avatar

Axonal peripheral neuropathy: Finally, a diagnosis!

Neuropathy | Last Active: 1 day ago | Replies (167)

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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.

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Replies to "Hello...Yesterday I had the nerve study done on my legs. results are 1. Bilateral lower extremity..."

Good morning, @trollsgate

And welcome to Connect! You mention two things among many meaningful things that I believe warrant highlighting …

You mention, "You can imagine all the things whirling around in my brain, while trying to not over think this." I can remember only too clearly my first few months post-diagnosis. I overthought and overthought everything until I'd worked myself into a panic. It took a few wise souls here on Connect to tell me, "Come on now, Ray, Go slow. Go slow!" I took their words to heart and it made all the diference. My PN symptoms didn't go away, but at long last I had a handle on my disease; my PN no longer panicked me.

The other thing you said that I feel is too important simply to bypass is: " … 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 … " ––to which all I can add is: "Ain't that the truth!" 🙂

Cheers! And again: Welcome!
Ray (@ray666)

@trollsgate
So glad you have a diagnosis. Now the doctors know what they are dealing with and can treat you accordingly rather than doing the hit or miss thing.
Also so glad that you can find comfort in Christ, knowing that he sees it all and is with you, and has been with you, as you travel a difficult road. Ps 23.