Dr. suspects ALS

[kllywlhlm]

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.

 

[lgelb]

Hi, and sorry for your troubles. I changed your status since you do not have a formal diagnosis, nor an EMG.

It seems fairly evident that your neurologist is not a neuromuscular specialist. Do you actually have an EMG scheduled? I'm not going to tell you ALS is out of the question, but I would get to an academic medical center (e.g. Barrow in Phoenix, Mayo or HonorHealth in Scottsdale) to get tested, because whatever it is, you should have a definitive diagnosis.

 

[Nikki J]

Agree that you should see a neuromuscular specialist. If your next appointment yields a diagnosis then you would want it confirmed and if it doesn’t then you need someone who can make one.

 

[kllywlhlm]

Thank you, the Dr. talked about referring me to Barrow as a next step. I am tired of waiting and am thinking about just trying to get in myself but I dont know if a referral is needed. I was also going to message her about getting an EMG and do not know why she didnt order one. Makes no sense to me. The Dr. is an experienced movement disorder specialist. She spent 1.5 hours with me. I dont think she or any Dr. would bring up ALS if they didnt suspect it (she had an intern with her and she asked him his thoughts and he thought it looked like ALS but he is just an intern so) and she even said she didnt usually do that or want to scare people but I asked her for an honest opinion. I am not settling on the ALS thing at all right now....I dont do rabbit holes but I just want to know what is happening one way or the other. I really didnt think it could be (even after my visit) but things are getting more troublesome so now I its a possibility in my mind. Sorry about the error in my registration but I couldnt figure out which box to check. Thanks much for your replys and I will post when I get any answers. Take Care