Thanks for your kind thoughts. It was such a relief to hear that very slim chance ALS. who would have thought I would be happy that it could be PLS. (much better than ALS) I hope you are doing ok. Hang in there hun things will work themselves out. Please don't take some statements made by others too heart. I think they are prob just fustrated because the are living with this terrible disease. And we really can't understand what they are going through. I don't think they intentionally mean to be hurtful.
I don't think it's that people don't like you, I just think that you , as a am are driving them crazy, we have to understand, alot of them are living with ALS and when we come around saying that we have had neg, testing we are driving them crazy. They have there own problems and they have been trying to help us. That is a gift to us and we have to appreciate why they get so upset. I hope you start feeling better soon, it does not sound like you have it. Take care, kathy
you do not have ALS!!! ALS does not affect sensory. With MS you have to have 3 episodes comers and goes and plaques in brain. You don't. MRI neg. Did they test B12? everyone experiences muscle twitching.
Hey there-- sorry to hear about what you're going through. It's good that you're getting an EMG and NCV; that will give your doctors a whole lot more to work with. Hopefully they won't reveal any major issues. After the tests, they may not be able to tell you what is causing your problems, but they will be closer to being able to tell you what isn't. My next step will likely be a follow up with a neuro or at least my PCP. I've only been to the neuro's office twice in the past two years, and during my last visit she didn't even do basic strength tests or order and follow up tests. I might have to become more aggressive in seeking out answers again.
hey mun, people dont realize that the odds of getting als is just as likely as ms. 1 n 1000.there is a young girl on this forum that has recently been diagnosed. i ve trying to get my ducks lines up,life ins. and long term care ins as well.Just in case.I dont know if i have als but the symptoms ae pointing n that direction.Have you had your cpk level checked, it s elevated with als.usually 2 to 3 times above normal.u can have that test done at your gp.Im hoping and praying for you.being so young the odds are lower for you.There is a syndrome called bfs.look it uo at bfs.com.hopefully thats what both of us have.my email is [email protected] best wishes.
hey mun. girl im still twitching,my ankles feel weaker,my calves are almost 2 inches smaller than they used too,my legs feel like they are dead,my left side feels numb and like its getting weaker.I just got back from my gp to take another cpk test cause it wa elevated last test.I cant get into my nuero until july.I think ur right about most people dont go to the dr. until something major happens.You and I might be those people who are very in tune with their body and know when something isnt right.Plus the veterans on here are only trying to ease peoles mind about the possibility of someone having this crap.So when we say there s something going on they think we re crazy.I know somethings not right .My gp made a good point today, if i have als it wont be a mystery much longer it ll show up.And thats when most people go to dr.So my clean emg might be just to early too tell.
hey munecagirl, mine symptoms started exactly 4 months ago.I had a charlie horse in my leg, but i didnt think too mch about it.Then my legs started feeling funny, then the twitches came on,mainly in my calf muscles,my calf muscles are also smaller than they used to be, my gf noticed also.Then my left fingers went numb and toes along with parts of my left leg.I just knew it was ms .But clean mris.I felt relived it wasnt ms but then i asked the nuero what n the hell is bothering me.he said make an appt and we ll draw some blood.But its an act of god to get into his office.I never dreamed in the beggining id could have als until the symptoms just wont leave.Here lately my legs feel like lead.if you need someone to talk to about this pls feel free to let me know.
hey munecagirl how how you holding up yoday.Im surprised however did ur mri s didnt suggest you have an emg as well.Your brain scan probaly would ve show something if als was attacking your brain stem.