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pearsjon
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i ahve read the previous posts about paralysis, and have a few questions. mine seems to be limited to my left arm and left leg and toes. not my whole body. is this anything like yall r going through or is it different?

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Yes, a couple here have periodic paralysis, which is a long story, but as doctorg said, folks need more details as paralysis can mean many things...though most unnerving.

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hi firewoman,

can't help you with the paralysis, just wanted to welcome you and say hi. i am sorry that you have reason to be here, but now that you have, feel free to ask all your questions!!! also, there is a lot of information on this site which is of tremendous help (and, like in my case, was so very helpful to find out that i wasn't nuts after all :lol: )

corina :)

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sorry i wasn't specific enough. u asked for it. paralyis in my toes,meaning i could not make them movein any direction if i wanted to. i can feel them,ie if u touched me i would know but i can't move. there is also swelling(non-pitting edema) when this occurs all the way up my left leg. left sided mainly. sometimes it happens on the right side but not as often. left side arm doesthe same thing( swelling, paralysis) it draws up to my chest at the elbow and i cant move it or my fingers. i have had every test i know of and the comments r always unremarkable.docotrguest will understand that lingo. ECG showed something but they couldn't explain it to me or themselves. that was the answer i got. i have POTS,OI,NCS. and now thinking fibromyalgia. my dys doc is specialist and feels some of it (paralysis, swelling) may go away. but hasn't yet. potasium seems fine on all tests, but they have told me it is a hard thing to catch at the times it goes low. and yes the weakness is there. sometimes i am paralized(as described above) all the way to the top of my knee. my whole left side has lost muscle mass and been getting weaker and weaker over the last 9yrs. i wasn't diagnosed with dysautonomis until may. but the paralysis and swelling began ot onsetof probs 9yrs ago. was when i knew something was wrong, but noone could tell me why and really still can't. if u need more than this please feel free to ask specifics. and thanks for helping me.

and yes it comes and goes.

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I am assuming that MRI of the brain and cervical spine were normal, correct? Have you had EMG at an academic facility? You may have a neuromuscular disorder that would result in weakness and muscle waisting. In addition, if your arm "draws" at the elbow, do you mean that it assumes a position that is not under your volunatry control? Is it painful? Does it feel like a spasm? Is your autonomic specialist a neurologist or a cardiologist? You really need to see a good neurologist at an academic center with these symtpoms.

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I am assuming that MRI of the brain and cervical spine were normal, correct? Have you had EMG at an academic facility? You may have a neuromuscular disorder that would result in weakness and muscle waisting. In addition, if your arm "draws" at the elbow, do you mean that it assumes a position that is not under your volunatry control? Is it painful? Does it feel like a spasm? Is your autonomic specialist a neurologist or a cardiologist? You really need to see a good neurologist at an academic center with these symtpoms.

mri's showed mild stenosis. with 3 bulging discs atlumbar and 5 in cervical. or vise versa. still said unremarkable. i had emg at tulane that's where they saw something they couldn't explain. never got the complete report on that one. when isay draw yes it does it on its own. if i pushed it down i could make it do go down but it hurts. i have muscle spasms everywhere including my intestines which i can feel. doc is niether just dysautonimia specialist. all the nuerologists i have seen say they cant find anything. one told me it was from altered weight bearing. i weigh 115 lbs. i mean come on. and when he said that i hadn't been using that leg inyears for full weight purposes, it hurt to bad. but it all comes and goes. i always thought it was MS because of that reason.

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hi ya firewomen welcome to our corner of cyber world! sorry you have pots BUT glad that you foind us...

wanted to chime in on this paralysis issue...Uhm I experience paralysis spells.. myself.. and they totally stink!

I will second the recommendation of find a good nuero.. But i can also relate to how incredibly frustrating it is to find one!

Uh you can look up in the phone book... for your town/city's local muscular dystrophy clinic/organization .. and explain to them what your are experiencing.. and they maybe able to set you up in ther clinic to me seen by a neuro-muscular doc.. which by the sounds of what your talking about.. is what you need..

Have they ever checked you for periodic paralysis? its my understanding ( dont quote me).. but you can have periodic paraylsis.. and not have a raise or drop in your potassium levels.. and still have it.. Uhm you can google Periodic paralysis...or uhm hypolalemia or hyperkalemia )sp???).. and you'll find alot of information...

I wish you luck and hope tht you can get into to see a neuromuscular dr!

and again welcome!

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When you said that there was something on EMG that the doctors couldn't explain, you confirmed my suspicion for a neuromuscular disorder. Obviously, I cannot diagnose by internet, but I do think that your problem is likely secondary to nerve or muscle disorders. Since it sounds like you are in Arizona, I suggest you get a referral from your primary doctor to go to Mayo Clinic in Scottsdale. EMG is a very tricky test and depends on the skills and knowledge of physicians performing and interpreting it. I suspect that the answers will come from EMG results.

The drawing of your arm is called dystonia, which may be a feature of the underlining and yet undiagnosed neuromuscular disorder. Good luck with your evaluation! POTS is not the cause of symptoms that you describe.

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thanks for the welcome, all. i will investigate what u have told me about and appreciate the info. as far as i know i have never been checked for periodic paralysis. i am in florida. north flroida . i am going to look for something close to here or maybe UAB. i have asked several times to read report from EMG at tulane,but still have yet to see it. i have always felt there is something more going on. u are the first people i have come across that can even back up the spells as being a valid problem. i have walked into neuro's office limping so bad (kinda like i had a wooden leg) and have them write in their report "no gait probs". i was floored.

thanks again for the advice and validation.http://dinet.ipbhost.com/style_images/1/folder_post_icons/icon6.gif

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