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04-20-2013, 05:28 AM | #1 | |||
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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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04-20-2013, 06:19 AM | #2 | ||
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Magnate
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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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"Thanks for this!" says: | echoes long ago (04-20-2013) |
04-20-2013, 12:02 PM | #3 | |||
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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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"Thanks for this!" says: | glenntaj (04-21-2013) |
04-21-2013, 06:32 AM | #4 | ||
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Magnate
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--will it help in terms of getting any services/therapies prescribed and/or paid for?
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04-21-2013, 10:54 AM | #5 | |||
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04-21-2013, 01:08 PM | #6 | ||
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Wow, thank you all so much. To answer your questions:
Susanne, no genetic testing (though my sister has PN). The blood tests they're doing are Antinuclear Antibodies, B12 and Folate, RPR, Throxine (T4), Triiodothyronine (T3), T3 Uptake, TSH, 3rd generation, and other testing: 042580, 001453, 225920. (I have no ideas what these tests are, but he did say he would do thyroid tests, so some of them are probably for thyroid.) Echoes, I've had it for seven years, but diagnosed six years ago. The first year was horrid. I couldn't walk any longer than 5 to 10 minutes before I was in severe pain. I went to neuro after neuro after neuro. I finally ended up with Dr. Hopkins at Emory. He diagnosed small fiber, but apparently that's not what it is. Koi13, the symptoms were horrible pain in feet, and worse when trying to walk. Also, shooting electric-type pains. Raglet, I have Rheumatoid Arthritis (in remission right now). I can still walk relatively well, have trouble with dizziness (not sure if it's from the feet or not). Sometimes, I have vibration, while in bed for night, from my feet all the way up to my head. Is this common? Glenn Taj and Echoes, thank you so much for the explanations and the links. I'll be checking them out soon. Do any of you have an idea what the prognosis is, if they can't find a cause? I am a very young 68, still working from home. Oh yes, I don't know if this has anything to do with anything, but I have advanced deg. disc disease, cervical and lumbar too. |
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04-22-2013, 06:25 AM | #7 | ||
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Magnate
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--"co-morbid"; that is, have symptoms that are contributed to by more than one condition.
It is often very hard to tease out the symptoms of spinal/nerve root problems from those of problems of peripheral nerves farther down the line--the symptoms can be exactly the same. All people with chronic neurological symptoms definitely need imaging--usually MRI with and without contrast--of suspected spinal problem areas to see if nerve or spinal cord compression is frankly evident. Moreover, rheumatoid arthritis is definitely one of those autoimmune conditions that can result in neuropathy: http://neuromuscular.wustl.edu/antib...max.html#rheum There is something called the "double crush hypothesis" in which it is theorized that nerves already compromised by one condition that then become compressed in some manner produce symptoms greater than the sum of the parts would lead one to expect. This is often mentioned for diabetics with nerve damage who then get spinal or nerve root compression on top of it, and have very bad symptoms, but I suspect it happens fairly commonly in other situations as well (such as when chemotherapy patients--many chemo agents are notoriously neurotoxic--experience nerve compression). Last edited by glenntaj; 04-23-2013 at 05:41 AM. |
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