Unspecified hereditary and idiopathic peripheral neuropathy?

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brightlights

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Hi all,

I am going to post here seems this just a general questions i have. Does anyone know if the diagnosis unspecified hereditary and idiopathic peripheral neuropathy has any link to ALS?
 
I have a family history of MND/ALS and was diagnosed with peripheral neuropathy and have had problems with my sensory nerves for which I take Pregabalin .
 
Idiopathic means the cause is unknown, so I would say no. I'm not sure what unspecified heredity means. We're you genetically tested?
 
unspecified hereditary and idiopathic peripheral neuropathy

That's pretty vague. Both unspecified AND idiopathic. I wonder how a hereditary peripheral neropathy can also be idiopathic.

Is there more to this?
 
I think my doctor had to put this as a code is required for a diagnosis. I am wondering if the and is supposed to be an OR and it is in fact a typo. I guess what i was wondering is if the cause is unknown, can ALS be a possibility? I have had tingling in hands and feet, stiffness in hands and feet, and shooting paints in legs. My doctor said my numbers were low for my age and should be higher. She is unsure of the cause and i think is going to keep looking into this. She may refer me to a neuro at some point. She ran the test because of the tingling, shooting pains etc i mentioned. I am by no means saying i think i have ALS, but seems the cause is unknown i wondered if it is a possibility along with the other thousand things that could cause these symptoms.
 
I read so many different takes on symptoms, and of course the internet is a breeding ground for different symptoms. I read most don't feel or have tingling and shooting pains when they have ALS as this is sensory, but then others such as the gentleman above had this, so i guess it is a case by case basis?
 
pain is not a primary symptom of ALS-ALS affects the MOTOR not the SENSORY neurons. Pain only comes later from frozen joints and tendons and bedsores which are all caused by motor paralysis
 
fyi I also have some sensory symptoms but these can be caused by other issues like a pinched nerve. and they don't kill you like
ALS does
 
I moved the thread as it seems to be changing direction. The gentleman to whom you refer is Steve? I do not know Steve but it seems he is not diagnosed with MND see his forum interest is I am in the process.
The genetic strains of ALS that I know do not have a known association with peripheral neuropathy.
And your symptoms as Neil said are sensory and you have a diagnosis. Idiopathic peripheral neuropathy( or hereditary?)
Please do not worry about ALS
 
Ok, so they may not be linked to ALS, just possibly some other issue? I did wonder this. I think maybe my doc is saying we don't know the cause yet. We haven't done much testing for possible causes
 
Thank you Nikki. This does clear things up. I think i was a bit confused on her diagnosis. I thought it may mean we don't have a cause yet, we just know that you have neuropathy problems. I didn't know if my doc saying my neuropathy numbers weren't normal meant failing muscles. I am not educated in neuropathy, and know nothing about it.
 
Sometimes it takes awhile to get a diagnosis because you may not have enough symptoms to meet the criteria for a diagnosis. ALS requires both upper motor neuron symptoms and lower motor neuron symptoms. It's complicated.

It's easier said than done, but try not to worry.

*hugs*
Laurie
 
Unspecified hereditary and idiopathic peripheral neuropathy is a billing code (2012 ICD-9-CM Diagnosis Code 356.9), not really a diagnosis. For insurance billing purposes, the doctor has to call it something... but unspecified and idiopathic pretty much tell you the doctor has no idea what it is, other than a peripheral neuropathy. And there are over a hundred different PNs.

I would say this diagnosis code does not rule out ALS, but it sounds like your sensory symptoms do.

Some neuros seem to track a PN only to make sure it's not treatable and then they give up, and just leave it as idiopathic because there are so many PNs and if there's no treatment what difference does it make.
 
Thank you Dusty, this does clear things up actually. She does not yet know the cause and is going to investigate options but for now, i guess she had to put something on there. Right now i think she suspects lyme, fibro, cfs, or all of these things combined. I was concerned as she did this test for neuropathy, it is a new machine they say is basically like an EMG, but results are instant. You stand on it, and put your hands on two plates, and it measures muscle function throughout your body. Mine was in the 80's and she said it should be at 100. I am not sure if this is muscle failing or not. I will have to ask her next visit.
 
User banned for multiple ids
 
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