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Old 10-20-2013, 03:45 PM #1
Ticktockphantom Ticktockphantom is offline
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Default Newly diagonosed with acute PN--trying to figure out cause

Hi; I know this question has probably been asked a zillion times, but I am wondering if anyone has experienced similar symptoms. About a month ago I suddenly developed a tingling in my fingers and toes. I am middle aged and have had no other previous symptoms or health problems other than possibly chronic migraine (my GP and neurologist don't quite agree on the diagnosis) and very occasional mild psoriasis. On a Sunday I went to bed thinking that my fingers felt a little strange and woke up with the tingling. This did not change much over the next five days and I did not worry too much about it because I already had a neurology appointment scheduled in relation to my headaches for a week from Tuesday. By the following Sunday, my toes and fingers felt sort of thick, I was experiencing pain when I typed or used my fingers much, my feet felt heavy when I walked for any length of time, and I noticed some slackening of my mouth on the left side. This progressed to include a sporadic twitchy feeling in my left eye and sporadic nearsightedness. On Tuesday I went to the neurologist who told me it was probably anemia (which made no sense to me). He prescribed a low dose of gabapentin (starting with 100 mg and increasing to 300 mg over 9 days), ordered nerve/motor testing, a head MRI, and blood work. Over the next few days my mouth worsened to the point that I could not give an open mouth smile, I was dribbling food and drink from my mouth, biting the inside of my mouth when I tried to eat, and had a hard time pronouncing words (even my 8 yr old son noticed). Then the mouth and eye symptoms quickly improved over a few days and are totally gone (all together they did not last more than a week). My toes and fingers have not changed much, but I do have some pain and I have noticed that in my right hand (which is worse than my left), I have some loss of dexterity. I also started getting sporadic buzzing sensations in my neck. Other than one probable migraine headache about 2.5 weeks ago, I haven't had any headaches (this could be the gabapentin).

My MRI came back normal. I had a nerve conduction study which the neurologist was "surprised" to find showed evidence of demylenating (sp?) polyneuropathy; she then did an EMG but didn't find any muscle weakness. I have had various blood tests (B-12, thyroid, glucose, folic acid, iron, not sure about the rest, I will request a print out); they all came back normal except a slightly low vitamin D (29). I was directed to take an additional vitamin D supplement besides the multivitamin). I discussed the results with the neurologist's PA and she ordered an additional thyroid test and lyme disease test but didn't think either was likely--don't know the results yet. She increased the gabapentin to 500 mg a day as I was experiencing pain still when I use my fingers (and occasionally when I don't). I also have a lumbar puncture scheduled next week which I was told was to rule out CIPD. Any suggestions for additional tests or experience with similar symptoms would be appreciated.

Thanks
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Old 10-21-2013, 06:55 AM #2
glenntaj glenntaj is offline
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Default This actually sounds--

--like a mild case of Guillain Barre syndrome, or one of its variants:

http://neuromuscular.wustl.edu/antibody/gbs.htm

The nerve conduction study showing some evidence of demyelination is a clue there--though I'm glad the EMG did not show evidence of muscle weakness. Do be aware, though, that sometimes this does not show clinically for some weeks after an initial acute attack; motor fibers are deeper within the nerve trunks than sensory fibers and are often slower to show damage or deteriorate when the primary mechanism is loss of the myelin coating of the nerves as opposed to an attack on the nerve fibers (the axons) themselves.

Guillain Barre and its related syndromes are autoimmune in nature; there are some tests, among them the spinal tap, which might show evidence of autoantibody activity.

It's good that the MRI came back normal, as the first thought in these cases is often a central nervous system demyelinating syndrome such as multiple sclerosis. Still, it would behoove your physicians to monitor that and perhaps do follow up MRI's in the future.
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Old 10-21-2013, 09:39 AM #3
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Originally Posted by glenntaj View Post
--like a mild case of Guillain Barre syndrome, or one of its variants:
Would Bell's Palsy be one of those variants (though I didn't see it listed in the link, E-B is, and is also mentioned as a possible cause of Bell's)? Ticktockphantom's facial paralysis made me think of Bell's, though that usually involves only one nerve.

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Old 10-21-2013, 10:06 AM #4
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Quote:
Originally Posted by Ticktockphantom View Post
Hi; I know this question has probably been asked a zillion times, but I am wondering if anyone has experienced similar symptoms. About a month ago I suddenly developed a tingling in my fingers and toes. I am middle aged and have had no other previous symptoms or health problems other than possibly chronic migraine (my GP and neurologist don't quite agree on the diagnosis) and very occasional mild psoriasis. On a Sunday I went to bed thinking that my fingers felt a little strange and woke up with the tingling. This did not change much over the next five days and I did not worry too much about it because I already had a neurology appointment scheduled in relation to my headaches for a week from Tuesday. By the following Sunday, my toes and fingers felt sort of thick, I was experiencing pain when I typed or used my fingers much, my feet felt heavy when I walked for any length of time, and I noticed some slackening of my mouth on the left side. This progressed to include a sporadic twitchy feeling in my left eye and sporadic nearsightedness. On Tuesday I went to the neurologist who told me it was probably anemia (which made no sense to me). He prescribed a low dose of gabapentin (starting with 100 mg and increasing to 300 mg over 9 days), ordered nerve/motor testing, a head MRI, and blood work. Over the next few days my mouth worsened to the point that I could not give an open mouth smile, I was dribbling food and drink from my mouth, biting the inside of my mouth when I tried to eat, and had a hard time pronouncing words (even my 8 yr old son noticed). Then the mouth and eye symptoms quickly improved over a few days and are totally gone (all together they did not last more than a week). My toes and fingers have not changed much, but I do have some pain and I have noticed that in my right hand (which is worse than my left), I have some loss of dexterity. I also started getting sporadic buzzing sensations in my neck. Other than one probable migraine headache about 2.5 weeks ago, I haven't had any headaches (this could be the gabapentin).

My MRI came back normal. I had a nerve conduction study which the neurologist was "surprised" to find showed evidence of demylenating (sp?) polyneuropathy; she then did an EMG but didn't find any muscle weakness. I have had various blood tests (B-12, thyroid, glucose, folic acid, iron, not sure about the rest, I will request a print out); they all came back normal except a slightly low vitamin D (29). I was directed to take an additional vitamin D supplement besides the multivitamin). I discussed the results with the neurologist's PA and she ordered an additional thyroid test and lyme disease test but didn't think either was likely--don't know the results yet. She increased the gabapentin to 500 mg a day as I was experiencing pain still when I use my fingers (and occasionally when I don't). I also have a lumbar puncture scheduled next week which I was told was to rule out CIPD. Any suggestions for additional tests or experience with similar symptoms would be appreciated.

Thanks
HI I have neuropathy in my hands and feet and t started out slowly like yours seems to be doing. I now have NERVE ITCHING in my nose and lips and think the triginimal nerve may be a cause. i cannot get a diagnosis and am noe on lyrica which helps some but a side effect is "off balance" all the time and i have fallen several times. Does anyone experience this nose and facicial nerve itching like buzzing on your nose and face and siome pain?
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Old 10-21-2013, 07:16 PM #5
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Quote:
Originally Posted by ckeetch View Post
HI I have neuropathy in my hands and feet and t started out slowly like yours seems to be doing. I now have NERVE ITCHING in my nose and lips and think the triginimal nerve may be a cause. i cannot get a diagnosis and am noe on lyrica which helps some but a side effect is "off balance" all the time and i have fallen several times. Does anyone experience this nose and facicial nerve itching like buzzing on your nose and face and siome pain?
How slowly did yours start out? I thought mine started pretty sudden but that may be a lack of knowledge or experience. Has yours spread from your hands and feet? I do not have buzzing on my nose or face but do sporadically in the back of my neck.
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Old 10-21-2013, 07:20 PM #6
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Thanks for your reply. The doctor asked me about that but I haven't had any of the usual precursors to it such as a respiratory or stomach illness so I had assumed they had ruled it out, but maybe not. I have read other people's accounts of having negative MRIs and still developing MS at a later date. Hoping that is not me.
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