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siuska

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Hi,
i am starting to have trouble typing...my fingers just aren't going where i need them to go...i don't notice any atrophy or cramping...just a funny, can't quite go where i want them to go...another funny feeling is that my tongue feels too big for my mouth...i am not tongue twitching and can move it side to side, but i get scared (and have) choked a little bit...this i noticed over the past few days. Another thing is i did notice a slight jaw tremor and flashes (like hot white darts of light) in my vision, although i do have Lasik...
..last summer i started twitching (but didn't really notice except the when laying down the bed would sporadically shake) then, last fall i started twitching very noticably body wide along with exercise fatigue and muscle cramps...i posted my EMG here and it did find abnormalities, but the doctor's think peripheral neuropathy with some slight left leg atrophy. No upper EMG was done because other than cramp/fascic, i didn't have weakness or uncoordination...i am going to the Physical Therapist to try and build up muscle so i can go back to work. i am weak and unsteady on my legs...i thought this diagnosis solved everything...now, i'm scared all over again. i am running out of test options to look for causes...

i noticed a lot of people here have similar things going on...the only thing left is upper emg and muscle biopsy and spinal tap...MRI clean, blood work clean...oy veh. Wouldn't this be extremely quick progression for ALS? onset of six months? i mean, if it is, maybe that would be a good thing? quicker than slower?

i need to have surgery to repair some damage for a previous surgery gone awry, but i keep stalling...if i have ALS, then having this surgery is just a plain waste of time and money...why is it, that noone in the medical community seems to know what end is up...even the specialists...jeez, i hate waking up every day wondering if i can get out of bed without falling down...and yes, it's gotten to that point.

i'm on my third neuro...and i whipped them all like a heartless hussy, but i still don't get anywhere with treatment/diagnosis...

i'm single and i had to move to my mom's (my 82 year old mom) because i am having these difficulties...how humiliating...know in good neuros in Columbus, Ohio?
 

carlogio

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Whipped them all like a heartless hussy? Oh my. If you're on your third neuro, maybe you should trust what they are saying. Sorry to sound harsh, I'm not meaning to be at all. When you say you find it hard to get out of bed, what do you mean exactly? No energy to do so, or just can't find a way to get out without falling down? Do your legs give way? Do you have no muscle? Is one of your legs smaller than the other? Have you had trouble swallowing? The jaw tremor, does it only happen when you push your teeth together and notice chattering, or is it noticably shaking? Trying to understand what's actually wrong...
 

siuska

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boom boom

yeah, noticed some slight trouble swallowing...slight tremor in jaw-very slight, mostly when i put my teeth together...PN COULD be in my hands (i hope that is what it is)...hands (left, uncoordinated, slow...i know what i want to do with them...it just takes awhile getting there)...yes, i fall down and go boom from time to time and now walk with a hiking stick... i don't think the Gait is off, it's just i get very stiff...and don't move quick enough to steady myself- very funny in yoga classes- everything quiet and peaceful then BOOM i go down...EMG said probably neuropathy...SNAPS normal...CMAP reduced with fibs, but no fascics...and i hope they never show up...i have painful cramps and bodywide fascics...i think the twitching is what bothers me most...it's like a constant reminder something is wrong...i wonder if my partial amputation of finger fired off some wierd CNS malfunction....atrophy showed up on EMG...i noticed legs were getting thinner and weak but, i assumed it was because i wasn't exercising like i used to...back in the good old days...let's just hope PT can put some meat back on them.
thanks
 

carlogio

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I'm no expert but I don't think you should be worrying about something like ALS at this point. Try and relax, I know it's not easy, I'm in the same boat. Watch some DVDs, eat some unhealthy food, read a good book. Just try not to assume the worst, it never helps. Take care.
 

wright

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Hello siuska

I think you do need to trust your neurologists and believe them. However, if you are insistant on getting another opinion, then I would go to Ohio State. They have a GREAT neuromuscular disease department . . . and I would absolutely trust what they say. I would call them and ask to see Dr. Victoria Lawson. Good luck to you.
 

DMHltd

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Hi siuska

Sorry for your symptoms. You seem to still have some sense of humor left though. If it was me I'd find the nearest ALS clinic and have them run me through the mill (if Ohio State isn't already one). Not that I think you have it because I don't have a clue even on my own situation. But as soon as I have some bona fide weakness thats what I'm going to do. At least they know what they are looking for. It sounds like any DX would be a relief for you. I wish you the best outcome possible.

Dave.
 

siuska

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Yes, any diagnosis AND treatment would be a relief...i wouldn't worry about ALS except that it is the elephant in the room now...maybe i am just paranoid every time they check the muscle around my thumb and finger and hit me on the chin...i just have to be patient and wait i guess....if this is peripheral neuropathy, it's awful...i am so stiff and sore i can barely move...i seem to have shaking in my body when i move...kinda herky jerky...
 
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