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Old 07-12-2012, 06:55 PM #1
boiler1993 boiler1993 is offline
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Default So frustrated...dont know what to do

Hello i posted earlier (called "peripheral neuropathy" - basic symptoms are tingling in legs, tripping, foot dragging) after 6 MRIs, an EMG/NCV, VEP (all normal), and a neurological exam (basics) my neuro has recommended me to a neurologist who specializes in hereditary neuropathies (my grandma has PN and cant feel ANYTHING from knees down). I am very frustrated because this new doc has no open apts until frebruary (At which point i will be back at school). anyway i have a few questions...

1. Anyone with smal fiber neuropathy or CMT .. what are the early symptoms of these? (my symptoms right now seem to be very mild)
2. What neuro disorders can be triggered by stress (all of my tingling has occured during stressfull periods of time).(either of the above)
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Old 07-12-2012, 08:11 PM #2
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Check out my forum concerning CMT at the top of the page under "PN Tips, Resources, Supplements and Other Treatments". There are many many types of CMT. Symptoms of CMT can become evident when you are young, old, or in-between. Or symptoms might not be that evident.

CMT has been and still can be misdiagnosed as something else. The fact that your Grandmother has PN and cannot feel anything from her knees down is interesting. There are many types of PN out there. Does anyone else in your family have anything similar? Hopefully you will get an answer soon. An expert neurologist who knows CMT might be in order in the initial diagnosis if indeed CMT is suspected.

February is a long time to have to wait. Perhaps you could find another doctor.
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Old 07-12-2012, 08:37 PM #3
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also both my emg and ncv were normal (according to my neuro) does this rule out CMT?
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Old 07-12-2012, 09:27 PM #4
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Quote:
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also both my emg and ncv were normal (according to my neuro) does this rule out CMT?
Not necessarily. When the myelin is damaged (CMT1) the nerve impulses are conducted more slowly than normal. If the axon itself is damaged (CMT2) the speed of nerve conduction is almost normal, but the strength of the signal is reduced. All forms of CMT are either demyelinating or axonal in nature. CMT is a multi-gene disorder and so there are many different defective genes which cause the disorder.

CMT affects the peripheral nervous system (PNS) and therefore it results in both motor symptoms (weakness and muscle wasting) and sensory symptoms (numbness). CMT is progressive and usually slowly.

Hope this helps.
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Old 07-12-2012, 09:58 PM #5
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Early symptoms,from childhood, for me were being unable to run, skate, or play sports. Also high arches and weak ankles. I have always been very clumsy and accident prone. My sister wore braces for drop foot fom early childhood. I did not develop numbness until my early 30's, but it has progressed from my toes to above my knees, like your grandmother. I am now 50. I have had progressively more pain and weakness in my legs, as well as my hands and arms, as the years have gone by, and the symptoms have really accelerated in the past three years. I walk with a cane, and am losing the ability to go up stairs.
As Kitt said, everyone's symptoms, onset, and progress are different. I have CMT type 2, axonal degneration. My EMG/NCS is abnormal and shows large fiber neuropathy, my skin punch biopsy shows an advanced small fiber neuropathy. I have very limited ability to move my toes, and there is visible wasting of the muscles in my feet and lower legs.
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Old 07-13-2012, 07:34 AM #6
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hmmm when i was a kid i was prone to falling alot (and ending up on my face)but i am currently a runner ... do small fiber neuropathy or CMT become worse during stressful times? thanks so much
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Old 07-13-2012, 08:14 AM #7
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hmmm when i was a kid i was prone to falling alot (and ending up on my face)but i am currently a runner ... do small fiber neuropathy or CMT become worse during stressful times? thanks so much
Stress definitely exacerbates CMT, it also seems to aggravate other neuropathies, so the answer is a fairly unequivocal "yes"!

I am a hiker. Or perhaps should say I was, as even flat trails are becoming challenging. I think some of us are attracted to certain types of activities because they push our limits,or help us deny them? Running is a very physically stressful activity, though, and you might do well to take a break and substitute walking or swimming until this is settled. I have an aunt who had CMT and compulsively practiced yoga into her nineties.
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Old 07-13-2012, 09:03 AM #8
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so is it possible that i have very few symptoms now becuse i am not stressed but when i was at school (during exam time) i tripped all the time and had tingles on an almost daily basis? because now that i am going to neurologists i feel like i have so few symptoms that i may sound crazy but i am worried that when i go back to the stress my symptoms will return as they were before...has anyone else experienced something like this before? thanks
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Old 07-13-2012, 09:28 AM #9
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Quote:
Originally Posted by boiler1993 View Post
so is it possible that i have very few symptoms now becuse i am not stressed but when i was at school (during exam time) i tripped all the time and had tingles on an almost daily basis? because now that i am going to neurologists i feel like i have so few symptoms that i may sound crazy but i am worried that when i go back to the stress my symptoms will return as they were before...has anyone else experienced something like this before? thanks
I know that my symptoms are worse during especially stressful times. If the relationship between your symptoms and your stress levels are as clear-cut as you describe, than perhaps you should direct your energies into meditation, or learning how to control your stress levels. There are many resources out there on the subject of mindfulness meditation and chonic pain. It is very effective.

Also, have you ever directly answered he question of whether running makes you feel better or worse or has no effect? Running does induce a meditative state which you can begin to apply to other times in your life. The main idea of mindfulness is to concentrate on what is actually happening at the moment rather than what you fear might happen. I can recommend some books if you like.
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Old 07-13-2012, 10:47 AM #10
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i am usually fine when i run but afterwards i tend to be clumsier / have more tripping ... also is becoming dizzy upon standing also a symptom of CMT or small fier neuropathy or is this unrelated? thanks for your help
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