dizzygirl Posted July 14, 2006 Report Share Posted July 14, 2006 Hi folksI've been searching around for neurologist who is familiar ith treating periodic paralysis... and possibly handling the sleep paralysis as well.. as there are a few diff. things going on.I've spoken with my local neuro w/ no luck...(i think I very well have seen allt the neurologist in this town.. for my pots.. and there are just like.. sorry cant help you!)I talked to my local cardio guy.. and he said I'm more then likely going to have to go out of town for this as..this isnt seen.. and no one here at home is going to be able to treat this..So I sending out some feelers to you all in hopes that you know of a neuro in the USA who treats this and will be willing to treat me...traveling.. I'm willing to do..this paralysis junk is for the birds.. I had a severe one this morning. and am at my witts end.. as its so very painful.. and recovering from it takes longer and longer..thanks Quote Link to comment Share on other sites More sharing options...
Sunfish Posted July 14, 2006 Report Share Posted July 14, 2006 hi linda -just curious....i know that you have the periodic paralysis symptomatically, but has it been diagnosed as such via blood work as well? obviously it needs to be dealt with either way, but i'm just curious b/c it may effect treatment, i.e. whether a specialist needs to actually make the diagnosis still or whether it's already in your records....anyhoo, here's a site that could likely point you in the right direction in terms of finding a doc:http://www.periodicparalysis.org/good luck & hang in there, melissa Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted July 14, 2006 Author Report Share Posted July 14, 2006 has it been "officailly diagnosed.. no.. but on an unoffical level yes.. kind of why i need a doc to "officailly" diagnosis it.. and do a proper sleep study for sleep paralysis.. and then to go over my current and old labs.. plus history....my potassium levels have been low for over 5 years more often low then normal...and i'm sure thru out my entire life.. as I've been paralysing since i was a child..its my understanding that this periodic paralysis might explain my incredibly high HR that i get.. aside from the pots realated stuff too.. but um yeah i think my records kind of speak for themself... if somebody who is fimailar with the disorders is looking at them that is...ya know?hey thanks for the link melissa! Quote Link to comment Share on other sites More sharing options...
worththewords Posted July 14, 2006 Report Share Posted July 14, 2006 Just curious, have any of your doctors explained the sleep paralysis and why you might get it? I don't get it like I used to but it's definitely a scary thing when it occurs. Everytime I've mentioned it to a doctor though they looked at me as if I had two heads. I hope you can find someone to help you! Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted July 15, 2006 Author Report Share Posted July 15, 2006 Alexia.. no the reasoning for it has not been explained to me.. only that it really sounds like I'm having 2 diff. types of paralysis occur.. thats why I'm hoping to find a neuro or any dco really that is specialized in these disorders.. so that i can get adequate treatment.. and maybe get grip on things..I've had sleep paralysis since i was a small child.. and it settled down a bit for a few years in my late teens.. but is now like going crazy...SO I will keep looking and i will let you know when i get an explaination as to why sleep paralyse occurs! Quote Link to comment Share on other sites More sharing options...
worththewords Posted July 15, 2006 Report Share Posted July 15, 2006 Good luck to you, Linda. I hope you find some answers soon. Quote Link to comment Share on other sites More sharing options...
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