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Old 02-09-2019, 05:26 PM #1
Lerch Lerch is offline
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Lerch Lerch is offline
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Join Date: Feb 2019
Location: US
Posts: 28
5 yr Member
Default Idiopathic, Axonial PN. Mostly weakness, anyone similar?

Hi everyone, I'm new and I hoping the experienced hands on this board can offer some advice. I was diagnosed with axonial polyneuropathy this summer. My main problem is weakness. Looking back, I first noticed a deterioration in my typing 2016/17, and had numbness in both feet/toes, although my right toe had been numb for 15+ years, along with a weak right quad, which I'm pretty sure is my back, which is what got me to a neurology workup in the first place.

Over the summer, it became obvious to me I had calf/foot weakness and weakness in my hands, forearms, and likely bicep/triceps. The leg issues were confirmed by emg, and the only thing noted for arms was a pinched nerve in the wrist.

Starting in early December, I noticed my quads had gotten weaker/unstable and this slowly continued into the holidays, with some involvement of the R quad as well. I got another EMG 1/3/19, only R leg which had the longstanding issue, and the doctor (Hopkins) said that I had a normal emg. It's since become even clearer that the right leg has developed similar weakness to the left.

I either have some sort of conversion disorder, or the emg is wrong, or something else. I've had all of the standard blood tests, so I can't imagine something else. It's driving me nuts, and my wife already thinks this is in my head, making the situation event harder to deal with. Feeling a bit desperate.

Any similar experiences, suggestions? Thanks!

PS, I should note there is an online review of the emg doc with an odd 'normal' emg eval that sounds like mine. Not me though.
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Old 02-20-2019, 03:32 PM #2
sprcko sprcko is offline
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sprcko sprcko is offline
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Join Date: May 2017
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Quote:
Originally Posted by Lerch View Post
Hi everyone, I'm new and I hoping the experienced hands on this board can offer some advice. I was diagnosed with axonial polyneuropathy this summer. My main problem is weakness. Looking back, I first noticed a deterioration in my typing 2016/17, and had numbness in both feet/toes, although my right toe had been numb for 15+ years, along with a weak right quad, which I'm pretty sure is my back, which is what got me to a neurology workup in the first place.

Over the summer, it became obvious to me I had calf/foot weakness and weakness in my hands, forearms, and likely bicep/triceps. The leg issues were confirmed by emg, and the only thing noted for arms was a pinched nerve in the wrist.

Starting in early December, I noticed my quads had gotten weaker/unstable and this slowly continued into the holidays, with some involvement of the R quad as well. I got another EMG 1/3/19, only R leg which had the longstanding issue, and the doctor (Hopkins) said that I had a normal emg. It's since become even clearer that the right leg has developed similar weakness to the left.

I either have some sort of conversion disorder, or the emg is wrong, or something else. I've had all of the standard blood tests, so I can't imagine something else. It's driving me nuts, and my wife already thinks this is in my head, making the situation event harder to deal with. Feeling a bit desperate.

Any similar experiences, suggestions? Thanks!

PS, I should note there is an online review of the emg doc with an odd 'normal' emg eval that sounds like mine. Not me though.
Naime is axonal,not axonial,i have
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"Thanks for this!" says:
Lerch (02-20-2019)
Old 02-20-2019, 04:58 PM #3
Lerch Lerch is offline
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Join Date: Feb 2019
Location: US
Posts: 28
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Lerch Lerch is offline
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Join Date: Feb 2019
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Posts: 28
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Hi sprcko, how are you doing? What kind of symptoms do you have?
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