Recent content by carendam

Oh Gosh. I'm a chicken when it comes to surgery. You both are amazing. Does this muscle biopsy tell if you have PLS? I know my muscles are just getting worse and worse. Thank you

Thanks Vicki I am going to ask my neuro. Does it hurt?

Hi vickim, No I have not had that done. The drs did mention that a yr ago, but it never happened.

Hi Johnny, Thank you. I did look it up and I don't fit the criteria for that. So I don't. I will ask my neuro about that one also. Thank you so much

Hi Akmom, Thanks. I will ask my neuro about that test. I see my neuro on Jan 2nd and thats when I will get my answer about PLS.

Hi Olly, Thank you so much. that would be great to talk to someone with similiar symptoms. My symptoms started with my legs. My seizure like episodes have been going on for 2yrs. but they are getting more and more violent. I'm alert and all but I can not speak at all. I have been through...

Your all awesome! Thank you so much. I know I can't let people bother me. It's hard my brother tells me all the time who cares what they think or why they are staring. Your absolutely right! You have a great attitude! I'm going to try to get out of the house more. It's hard when my hubby...

Thank you for your input. No I never had an eeg. I had the emg done with all the wires and the painful zapping. I get stiff also. I twitch like crazy my neuro saw this and he says it's cause of the muscle spasms. I also do the amazing foot stomp. I had to stop going to church because I would...

Thank you AKmom, My problem is I never know when I am going to have my seizure like episodes. So I try to do things and try to get out of the house with my hubby but then I worry when I start my episode it's very scary and people just stare at me like I have ten heads. I'm afraid to get out of...

thanks Johnny

Thank you Everyone. I had every test done. I had the als gene test the HSP gene test. I have been through the ringer with tests and bloodwork. Since 2007. I am in and out of the wheelchair. I am starting to lose my speech. My muscle spasms are so scary it's like having a seizure. I still...

I'm new here. I'm just getting this devastating news that I possibly have PLS. I would like know how everyone copes. Any advice Thank you