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Old 04-19-2013, 08:05 AM #1
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Default Axonal Sensory Motor Polyneuropathy - ?

Good morning, everyone. I used to be on the old BrainTalk forum; well, I used to check in. Mrs. Doubtfire may remember me. I've had PN for about 12 to 15 years, and once the medication stabilized me, I didn't go back to the neurologist. I've just had a round of tests for brain, with most of them turning out fine, but still waiting on MRI. In addition, my new neurologist did another EMG and nerve conduction. His diagnosis is Axonal Sensory Motor Polyneuropathy. Can anyone tell me what this is, and its progression? I went to Bing, but didn't learn much. The doc is having me do blood work to ascertain the cause to slow progression. Does anyone know anything about this? Any advice is welcomed.
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Old 04-19-2013, 08:40 AM #2
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Good morning, everyone. I used to be on the old BrainTalk forum; well, I used to check in. Mrs. Doubtfire may remember me. I've had PN for about 12 to 15 years, and once the medication stabilized me, I didn't go back to the neurologist. I've just had a round of tests for brain, with most of them turning out fine, but still waiting on MRI. In addition, my new neurologist did another EMG and nerve conduction. His diagnosis is Axonal Sensory Motor Polyneuropathy. Can anyone tell me what this is, and its progression? I went to Bing, but didn't learn much. The doc is having me do blood work to ascertain the cause to slow progression. Does anyone know anything about this? Any advice is welcomed.
I have axonal sensory motor neuropathy, both large and small fiber. In my case it is hereditary, CMT, and it is progressive, as the nerves die back the muscles start to die as well and you develop increasing disability. For me the numbness is moving toward my hips, I cannot move my toes, and my feet and ankles are losing strength. It is a slow but inexorable process.
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Old 04-19-2013, 09:30 AM #3
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I have axonal sensory motor neuropathy, both large and small fiber. In my case it is hereditary, CMT, and it is progressive, as the nerves die back the muscles start to die as well and you develop increasing disability. For me the numbness is moving toward my hips, I cannot move my toes, and my feet and ankles are losing strength. It is a slow but inexorable process.
Susanne, I am so sorry to hear this. It sounds as though your progression is far worse than mine since you probably developed it early on. For now, my med--Gabapentin--is keeping it under control. I just wonder if the process, for me, will be slow as well. I have no ankle reflexes, and I'm having trouble knowing where my feet are since I'm sometimes unstable.
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Old 04-19-2013, 08:59 PM #4
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Susanne, I am so sorry to hear this. It sounds as though your progression is far worse than mine since you probably developed it early on. For now, my med--Gabapentin--is keeping it under control. I just wonder if the process, for me, will be slow as well. I have no ankle reflexes, and I'm having trouble knowing where my feet are since I'm sometimes unstable.
I have the same trouble knowing where where my feet are, it is very difficult to stand up when I have been sitting. I am also on gabapentin, it helps with the burning and zaps, but not the deep bone / muscle pain, I have MS Contin and oxycodone for that or I would be on the sofa all day. I function pretty well, walk with a cane, two if outdoors, but I get so tired by the evening.
I was about 46 when my symptoms started to really affect my life, I am 51 now. The past five years have been a series of setbacks and losses, but I am thankful that my children are nearly all grown, only one is 14, the rest are able to take care of themselves and they all help out. Anyone going though this with young children is suffering far more than me.
Gabapentin only helps with symptoms, it will not slow the disease process. If yours is hereditary, and your symptoms sound too familiar, nothing will do that. What blood tests are they planning to do? Are they doing any genetic testing?
Good luck!
Susanne
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Old 04-19-2013, 10:01 PM #5
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basically it means that you have axonal degeneration or damage to multiple sensory and motor nerves. the axon is the part of the nerve that carries the electrical signals. The velocity and amplitude of those signals are slower and less because the axons are damaged. over time the covering or insulation of those axons, the myelin sheath will also start to deteriorate as they are affected by the deterioration of the axons they cover.
I have the same diagnosis. My progression has been slow and steady over the past 12 years. presently i am numb above both knees and to a leeser degree in my hands and lower arms. i just had emg/ncs's on my feet, legs and lower back today and on my hands and arms 4 weeks ago. There will be no happy ending to this story for me. My cause was exposure to toxins.
Your progression sounds slow and steady also to this point.
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Old 04-19-2013, 10:22 PM #6
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What are/were the initial symptoms of Axonal Sensory Motor PM?
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Old 04-19-2013, 10:36 PM #7
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for me numbness in both big toes and foot pain.
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Old 04-20-2013, 05:28 AM #8
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I have senosrimotor axonal neuropathy - it has affected my ability to walk, a lot. My doctors are not really sure how much longer I will be able to keep walking. Currently my steps are only a couple of inches long, and many of the muscles in my legs and my glutes are very weak now. Also, I am very numb in the same areas. my first symptoms were foot drops and numbness. Mine is caused by my lupus.
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Old 04-20-2013, 06:19 AM #9
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--"axonal sensorimotor polyneuropathy", is, as Echoes points out, more descriptive than anything else; it indicates that the initial deterioration is in the nerve fiber rather than the covering/insulating myelin sheath and that it affects sensory more than motor functions (but that it affects both).

Most of the time, this is a diagnosis made for insurance purposes, in that there is a code for it and billing for visits can occur.

It would be far more interesting and useful to get a diagnosis that would imply a CAUSE for the axonal deterioration, if one can be found, as that may have implications for treatment and improvement. Common causes of axonal neuropathy include diabetes, a number of anti-nuclear antibody autoimmune diseases, chemotherapy and other toxic exposure, gluten sensitivity . . .what kinds of other testing for cause have you had?

So you can have some resources, look at:

www.lizajane.com

http://www.questdiagnostics.com/test...ripheralNeurop

http://www.aafp.org/afp/1998/0215/p755.html
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Old 04-20-2013, 12:02 PM #10
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a little off topic so please forgive me

Glenn after a 12 year battle, and numerous lawyers telling me i could not get it done, i got a letter last week acknowledging finally the cause of my peripheral neuropathy from a federal government entity. The 168 pages of evidence i submitted might have finally opened their eyes.

Last edited by echoes long ago; 04-20-2013 at 04:54 PM.
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