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01-19-2013, 09:16 AM | #1 | ||
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Junior Member
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Hi NeuroTalk. I've been scouring this website for months and I felt like it was time I could post. I have related to so many of your ordeals and I felt like it was time for me to post. I'll make this as short as possible. I entered the hospital in March when I had a 'Peripheral Neuropathy' in my feet on March 30th, 2012. I was told that it was either due to Guillain Barre or Disulfiram Toxicity. Due to the EMG results my Neurologist felt it was most likely due to Disulfiram Toxicity and I was not treated. Most of my symptoms went away (minus the movement in my toes) and I was able to climb a 15,000 foot mountain in October, I'm 30 and in fairly decent shape.
Around Thanksgiving all of my symptoms came back, but worse. I have weakness all over. I am exhausted. But recently I have noticed I can't move my forehead voluntarily, it does move involuntarily but very weakly. It's so strange. The thing that I want to know if anyone can relate to is my breathing issues. At first I was struggling to get a full breath. Now I have these throat spasms, they sort of exist below my chin and in my throat. It isn't very bad when I am at rest, I only really notice it when I am walking or talking, but it is really frustrating. I haven't found anything on the message boards about this and was wondering if anyone else has experienced this. I am currently undiagnosed and am working with a new Neurological team. I was prescribed Valium for the spasms but it doesn't really help. I start seeing the new Neurologist this week, but I was hoping someone else may be able to relate. Thanks for listening. I wish everyone who reads this all the best, I know that if you are on this board you are struggling as I am. |
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01-19-2013, 11:59 AM | #2 | |||
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Wisest Elder Ever
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Welcome to NeuroTalk:
I'd suggest you use a form of thiamine B1 and see if it helps. Disulfiram blocks aldehyde metabolism, and thiamine enables it. Some people may genetically be sensitive in this pathway and have trouble with it. A new better B1 is called Benfotiamine and lasts longer in the body. It is now available at affordable prices and costs just a little more than thiamine which is very inexpensive. Most of us here on this forum use Doctor's Best brand, and it is on Amazon now conveniently. I'd start with 2 of these a day, and if you improve, then drop down to 150mg a day after a couple of months. If you have drooping eyelids, combined with the other weak muscles of the face, you should get tested for myasthenia gravis. This is our forum: http://neurotalk.psychcentral.com/forum77.html Breathing issues come with MG, and it is possible your toxic experience damaged the neuromuscular junction. (If you have had botox anywhere? --this could be a complication of that) So do another duplicate post at MG forum here and see what those experienced posters think. Sometimes it can be difficult finding a doctor who understands MG.
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"Thanks for this!" says: | hankster1 (01-21-2013) |
01-20-2013, 07:43 AM | #3 | ||
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Magnate
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--that this is a variant of chronic inflammatory demyelinating polyneuropathy, or CIDP, which can come in various different forms, but is usually considered the sub-acute/chronic version of Guillian Barre syndrome, with relapsing/remitting components:
http://neuromuscular.wustl.edu/antib...mdem.html#cidp |
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"Thanks for this!" says: | hankster1 (01-21-2013) |
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