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Old 11-22-2010, 02:58 PM #11
Hermes Hermes is offline
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Default So I not alone

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Originally Posted by invisable View Post
Doesn't this mean one does not have neuropathy?
Glad I'm not the only one. My Dx is Idiopathic Polyneuropathy, which means many peripheral nerves throughout the body malfunction simultaneously and no one knows why.
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Old 11-22-2010, 03:30 PM #12
invisable invisable is offline
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Default Hope it is not CNS......

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Originally Posted by echoes long ago View Post
depending on how long you have had PN an emg can show up negative because not enough damage has been done yet to show up on that test. If your symptoms continue you might want to repeat that test in another year or so and see if something shows then.

For the skin biopsy as Glenn has posted unless you are within a certain percent tile it is not considered Small fiber neuropathy yet. Again it may take a while to show enough damage to be considered a positive test.

Just something to keep in the back of your mind for the future.
That is why I keep thinking late onset MS (CNS), have read that can also start with abnormal sensory sensations.......scares me.........thinking about visiting an MS specialist, just for peace of mind. I am a professional worrier (I am sure you all noticed!)
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Old 11-22-2010, 08:27 PM #13
rose_thorn98 rose_thorn98 is offline
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Originally Posted by invisable View Post
That is why I keep thinking late onset MS (CNS), have read that can also start with abnormal sensory sensations.......scares me.........thinking about visiting an MS specialist, just for peace of mind. I am a professional worrier (I am sure you all noticed!)
One thing that all the Dr.s I've seen told me is that MS is not all over body, it will effect one area at a time. I still insisted on an MRI, but it was negative. But I too have wondered. But with MS there are muscle control issues and alot of people loose vision or have blurred speach as first signs too. Guess yo can always have the MRI to give you peace of mind.
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"Thanks for this!" says:
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Old 11-22-2010, 09:43 PM #14
invisable invisable is offline
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Default Rose to the rescue again.........

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Originally Posted by rose_thorn98 View Post
One thing that all the Dr.s I've seen told me is that MS is not all over body, it will effect one area at a time. I still insisted on an MRI, but it was negative. But I too have wondered. But with MS there are muscle control issues and alot of people loose vision or have blurred speach as first signs too. Guess yo can always have the MRI to give you peace of mind.
Thank you, my Dr. never told me that MS is usually in one area, he just keeps saying, "you don't have MS" (I like reasons). Thank you for that info, makes me feel better.
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Old 11-23-2010, 02:31 PM #15
rose_thorn98 rose_thorn98 is offline
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Originally Posted by invisable View Post
Thank you, my Dr. never told me that MS is usually in one area, he just keeps saying, "you don't have MS" (I like reasons). Thank you for that info, makes me feel better.
I like reasons too! Drives my Dr.'s crazy....I ask alot of questions. I think the prefer the paitents who don't ask questions, just take the RX and leave them alone. That is not me! I want real answers!
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Old 11-23-2010, 04:24 PM #16
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Originally Posted by rose_thorn98 View Post
I like reasons too! Drives my Dr.'s crazy....I ask alot of questions. I think the prefer the paitents who don't ask questions, just take the RX and leave them alone. That is not me! I want real answers!
Last couple of times I've been to doctors I show up with notes so I don't forget to ask any of the questions I have. I've also brought print outs of information that I've found to ask questions. You have to be proactive with docs.
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Old 01-05-2013, 12:57 AM #17
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Default Daughter with normal EMG and skin biopsy

Ya'll, we are so frustrated and weary. Talked with our newest Pediatric Neuro at Children's National Medical Center after waiting 5 weeks for our child's skin biopsy results. They were normal. She had a normal EMG 2 years ago and 1 year ago. Yet, she has been hospitalized 10 times this past year for severe pain episodes. She has Type 1 diabetes, proximal muscle weakness, ptosis of the eyes, 2 unknown Mitochondrial mutations, a waddling gait, a hand tremor that comes and goes. The Neuro today suggested she is Psychosomatic. Really? She can fake all of the problems and abnormalities. Oh an MRI over a year ago showed "non-specific" white matter changes. Muscle biopsy showed Type 1 muscle fiber hypotrophy and a full body ultra sound showed increased subcutaneous fat and decreased echogenecity. So many, many, many unspecifics. But ya'll can there be that many abnormalities and be Psychosomatic. Ticked me off. Why is it so hard to get help and answers?
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Old 04-05-2021, 02:32 AM #18
Tzolo Tzolo is offline
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Originally Posted by Hermes View Post
Glad I'm not the only one. My Dx is Idiopathic Polyneuropathy, which means many peripheral nerves throughout the body malfunction simultaneously and no one knows why.
As I read your threads , you see that idiopathic is when doctors doesn't search. If you do all exams then you have the diagnosis..
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