New Member- DeMax15 Introduction

[DeMax15]

Hi All.
I was diagnosed approx a year ago. Out of nowhere, started falling...when coaching football, at the gas station..etc. After the full gamete of 3 EMG's (2 requested by myself to check progression), spinal puncture, MRI's, Nerve/Muscle Biopsy, etc.... In my head, after all of that, I always have my doubts...but thats me. I guess I have always been doubtful, just because at the moment, it is still completely in my lower extremities (both legs...hips), and it has not progressed upward much. Now, I do have exreme moments of exhaustion and my forearms and hands are starting to cramp up.. I started with a cane, moved on to a rollator and now I have graduated to a wheelchair. I can not stand on my own, and walking is LONG gone! The only "walking" that I do is about 10 steps to my car...and believe me, thats ALL I have in me! I tried 15 when my car was parked a little further from my front door...and guess what, I didnt make it! I went down! Hard part is, I have no way of getting up myself. My legs are completely useless! I always think....are others in the same boat I am!? Where you have had this in one section of your body for a long time? Is this common? I know everyone progresses differently, but is it possible to go a couple/few years without progression, and still consider it....ALS ?? Sorry to be winded, but its always on my mind! God Bless all!! - De

 

[Nikki J]

Hi there. We all are different. I know someone who indubitably has ALS ( multiple specialists and theirs is genetic ( C9) after 16 ( I think maybe more now) years it is still in one leg. That leg is badly compromised but the rest is ok. My aunt was more than a dozen years I had more than 3 years of one leg involved only. Just a few examples but yes it is possible. If you had an appropriate diagnostic workup and confirmed by a specialist I am afraid I don’t see a reason for doubt. Asking your neurologist are you sure is common. We had a thread a few years ago where a number of us admitted to questioning our neurologists. I think people often hear 2-3 years and have seen pictures of late stage PALS. and say well that isn’t me

 

[KimT]

I have a friend PALS who is about five years in and she is still in one arm only. Just starting to affect her other arm but her hand in the good arm is strong. She still drives but thinks she'll stop soon.

I met another man in my support group who is 16 years in and only his legs are bad. He JUST went into a power chair this year. His arms, hands, voice, and breathing are all good.

My legs are the worst but I use a small wheelchair. I have a big PWC but really don't use it. I can still drive but it takes planning. I have to be close to where I'm going and I take my little chair down to the car (parking garage.). It wouldn't work for anything other than doctors' appointments, groceries, and short visits.

I just had my nine-year ALSaversary on August 26th.