Help appreciated

Status
Not open for further replies.

finnmale

New member
Joined
Jun 30, 2022
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
FI
Hi everyone and thank you very much for your possible help in advance.
I am a 44 yo male and I started to have some minor muscle twitching last October on my right foot. Then during the winter it spread to other muscles mainly affecting calves and thighs, occasionally on hands too. I also suffered from some muscle fatigue and exercise intolerance. I had very “light” Covid in late April.
Now in the end of May I was hospitalised for a day after my Creatine Kinase level was really high in a lab test taken after I couldn’t perform some muscle exercises without a muscle tremor and having to stop after 10 minutes. The CK level was first 3000, then 11000 until beginning to decrease. I also suffered from a (middle) back pain then. Now the CK is back to normal.

The hospital staff decided that I needed some other tests, too and send me to EMG and NCV. The doctor doing the tests didn’t tell me much but when I asked her if there was something she said that the EMG was “not perfectly normal” and also took an ultrasound from my left biceps (didn’t say anything about that). This abnormality in EMG seems to have made me very, very anxious about possibility of ALS (abnormal EMG and fasciculations combined made me reading a lot of scientific papers about ALS/MNDs and ‘convinced’ me of now having ALS as BFS don’t have abnormal EMG).

The fasciculations are now quite bad and feeling all over the body. Especially in the night time the fasciculations and “electric” feeling keep me from getting sleep, feels like there was constant electric current going on in my muscles. Last night I also felt myoclonus on my left foot. Tingling is also constant in my both legs.
In the daytime my muscles, mainly thighs, calves and biceps feel very fatigued/jello/tight which makes walking a bit hard and if I persist I will get cramps (feels like I had run a marathon). I have been trying to say that these are occurring in both sides of my body which, I guess, isn’t typical for ALS, but then I think I have missed the start in my right foot earlier.
I have a appointment in the hospital next week (July 7), but these night time sensations/not sleeping/constant twitches and perceived muscle fatigue make it really hard to try to stay calm and keep living my life. Would you guys have any advice for me?
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
12,272
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
A high CK that went back to normal without any intervention suggests that you could have had an acute myopathy, which could certainly be seen on EMG and have other manifestations like increased twitching. That is something that could have come out of COVID or a too-heavy workout or both, or a more ongoing process like adult-onset myopathy. I presume you'll know much more in a week, but this doesn't sound like ALS.

Best,
Laurie
 

finnmale

New member
Joined
Jun 30, 2022
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
FI
Thank you very much for your reply, Laurie!
 

finnmale

New member
Joined
Jun 30, 2022
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
FI
Just to report the continuation of investigation for my symptoms. I visited the rheumatologist today but unfortunately I was not relieved of my worries. There were “myopathic changes” found in my arms in EMG. The lab tests for autoimmune diseases and myositis were negative so the next appointment will be with a neurologist. In the meantime, the fasciculations have persisted and even increased but I still seem to have the muscle power left and no detected clinical weakness. (Last October I lost power from both hands after an exercise but the neurologist I consulted then said it’s nothing.)

This waiting feels quite bad. But if I have understood correctly the muscle weakness should be persistent and already visible in ALS?

Thank you once again.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
14,288
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
myopathic changes are utterly different on emg than changes related to ALS so they point away from ALS. We don’t know what is wrong with you but as Laurie said an adult myopathy is possible. That is unrelated to ALS
 

finnmale

New member
Joined
Jun 30, 2022
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
FI
Thank you Nikki, this was a very important clarification for me!
 
Status
Not open for further replies.
Top