kllywlhlm
New member
- Joined
- Apr 19, 2021
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- AZ
- City
- Mesa
I will try and keep this short. LOL. So my issues began 3 years ago. I NEVER suspected ALS. Was diagnosed 2.6 years ago with Fibromyalgia and/or cramp fasciculation syndrome at the Mayo Clinic Rochester. I didnt think it was a correct diagnosis but just went with it because I was tired of trying to figure it out and see Dr.'s. Things slowly progressed and I tried to ignore them but it became impossible.
I started to see Dr.'s again about 6 months ago and they kept passing me on to another one. Last Neuro said it looks like ALS. I wash shocked as I never went down that rabbit hole. I thought sure I told her that I would be way more messed up by now if it was ALS and she said not always and sometimes it can be very slow. Well she ordered a bazzilion tests (again) to rule out other things and they of course all came back mostly normal. I have yet to have the EMG and I am thinking that will be the decider. I had one 2.6 years ago and it only showed fasciculations. The only other thing she suspected was Huntingtons disease and honestly that would be worse. I know this is getting long so sorry.
My symptoms and Dr. findings are now as follows. I have motor deficit as she called it in my face. I have clonus type tremor in my jaw, legs, arms, neck and hyperreflexia in my legs. I have clinical weakness in my neck and left hand and arm. I struggle to open, squeeze or lift anything with my hands (worse on the left). I struggle to open doors, pull up my pants etc. I have incoordination of my arms and legs. They jerk around and shake.
I have body wide fasciculation but worst in my calf area. Its pretty nonstop. I have muscle cramping a lot (in my legs mostly). I also have started to be woke up at night with my legs kicking violently and sometimes cramping up pretty bad. Legs also jerk sometimes when trying to get to sleep. I have some trouble also with just rolling over in bed or pulling myself up from a lying position.. My body shakes upon doing so.
My fatigue is pretty bad after pretty moderate exertion and my muscle shaking intensifies after being engaged. I could go on but I wont...lol. I am not freaking out, as I just keep adapting as I go but I am praying they dont find it is ALS. For a bit I thought no way but even since my visit a few months ago things have worsened... I am now thinking it well could be. I just want to know after all this time and frustration. Whatever it is. One thing that keeps me from thinking its ALS is that I dont have any atrophy but maybe that comes later???? My left bicep muscle is fairly absent but no indentations. I did lose a shoe size which is weird. LOL.
Anyways, I dont know if anyone reads these but if you did thank you. I dont see my dr. again for another 3 weeks. She is booked out ridiculously. So I wait.
I started to see Dr.'s again about 6 months ago and they kept passing me on to another one. Last Neuro said it looks like ALS. I wash shocked as I never went down that rabbit hole. I thought sure I told her that I would be way more messed up by now if it was ALS and she said not always and sometimes it can be very slow. Well she ordered a bazzilion tests (again) to rule out other things and they of course all came back mostly normal. I have yet to have the EMG and I am thinking that will be the decider. I had one 2.6 years ago and it only showed fasciculations. The only other thing she suspected was Huntingtons disease and honestly that would be worse. I know this is getting long so sorry.
My symptoms and Dr. findings are now as follows. I have motor deficit as she called it in my face. I have clonus type tremor in my jaw, legs, arms, neck and hyperreflexia in my legs. I have clinical weakness in my neck and left hand and arm. I struggle to open, squeeze or lift anything with my hands (worse on the left). I struggle to open doors, pull up my pants etc. I have incoordination of my arms and legs. They jerk around and shake.
I have body wide fasciculation but worst in my calf area. Its pretty nonstop. I have muscle cramping a lot (in my legs mostly). I also have started to be woke up at night with my legs kicking violently and sometimes cramping up pretty bad. Legs also jerk sometimes when trying to get to sleep. I have some trouble also with just rolling over in bed or pulling myself up from a lying position.. My body shakes upon doing so.
My fatigue is pretty bad after pretty moderate exertion and my muscle shaking intensifies after being engaged. I could go on but I wont...lol. I am not freaking out, as I just keep adapting as I go but I am praying they dont find it is ALS. For a bit I thought no way but even since my visit a few months ago things have worsened... I am now thinking it well could be. I just want to know after all this time and frustration. Whatever it is. One thing that keeps me from thinking its ALS is that I dont have any atrophy but maybe that comes later???? My left bicep muscle is fairly absent but no indentations. I did lose a shoe size which is weird. LOL.
Anyways, I dont know if anyone reads these but if you did thank you. I dont see my dr. again for another 3 weeks. She is booked out ridiculously. So I wait.