Concerned and need some more feedback

[Mattatut]

I was on here about 6 months ago when my fasciculations started. I had no other real symptoms of anything, yet had an EMG/NCV and all was good. Was told BFS and to move forward, however, the neurologist did say I should have a follow up EMG in 6 months.

Fast forward now and for the past month I've noticed my balance is suffering, my gait isn't as good and I just feel weak in the legs. Of course, that could be in my head as I know it's different between clinics weakness and perceived.

I did, however, decide to go see a new neurologist, as I've since moved, and he did an exam, ordered some lab work, and scheduled me for an EMG/NCV for this coming Thursday. I went to get my labs this morning and my CK was 891, and the range is supposed to be 60-400. So pretty elevated, but, I did work out both Saturday and Sunday on my exercise bike and with weights, and it was the first time I've lifted or ridden in 6 months. I guess I started thinking its time to get my body back in shape of this is nothing.

Just curious if anyone has any thoughts on the CK being that elevated due to the workout, and if the balance issues after 6 months of fasics are indicative of ALS. The things I've been reading lead me to believe I'm showing signs of LMN. Unsteadiness, leg weakness, fasics, very light reflexes, etc.

My wife and I have discussed it and she thinks it's probably the worrying as she says her balance sucks too and she's a 35 year old in shape woman who does Yoga. I'm a 44 year old out of shape, somewhat overweight, hospital CEO who has tremendous stress every single day. Any thoughts would be appreciated....

 

[lgelb]

Hi, Mattatut,
Not really enough info to comment and the 2nd EMG is imminent so really no reason to, but elevated CKs of that magnitude are not uncommon and balance per se is not generally an issue as more typically there is a simple inability to walk, stand, exercise, etc. -- to even begin the movement of a voluntary muscle. As you know, fascics are nothing in themselves and go along with being out of shape, esp. if your exercise is sporadic yet intense. Regardless of what you have or don't, for the sake of your heart and general fitness, I would try to be more consistent in timing physical activity.

Best,
Laurie

 

[Atsugi]

CEO, maybe my experience is relevant.

Overweight and out of shape is no way to live. It's killing me.

After my wife died of ALS, I sat in a chair for five years. (Maybe just a little hyperbole.) When I finally began to move around, I sweat waterfalls, huffed and puffed, and sat back down. I thought I was gonna die. Saw lots of docs who ran lots of tests and gave me some pills that caused weird stuff to happen.

Spent 6 weeks in physical therapy with the PT guiding me thoughtfully on getting individual muscles back on line so my body could get through the day without overstressing any muscle. THAT WAS FANTASTIC. Whole new life.

You clearly have no reason to think on ALS, but maybe a little pill and a lot of guided PT will help.

 

[Mattatut]

Thanks Mike. I've seen you post so much here and appreciate what you've done and said, especially after what you've been through.

 

[Mattatut]

Great news...clean EMG! Thanks again Mike for your great advice! God bless all here!