My Dad fought ALS for 8 years and I’m worried I may be developing symptoms

[Icholm]

I just want to start by sending my love and support to each person out there currently fighting or having a loved one fight this.

My dad was diagnosed with ALS at age 46 and fought for over 8 years. I am a 30 year old male and I do not have any other relatives diagnosed with ALS or FTD so the thought was that my dads case was sporadic. I developed body wide muscle twitches approx 5 years ago and a clean emg ruled them benign. This past month I have been feeling like my neck range of motion has been limited and muscles in neck stiff accompanied by headaches every morning that persist all day. There is no better way to describe it than my head just feeling like it is floating. When walking my gait has become slower and unsteady and I often get dizzy and tired. I am constantly yawning but cannot seem to finish a yawn. The last 2 times I have been driving I have gotten very dizzy and motion sick and had to stop. My legs have been shaking and I developed a pain in calf while walking. I often feel short of breath and have not been able to sleep through the night in a week. Fasiculations have become more prominent. It feels as I’m not ever getting enough air.

I guess im just worried because things don’t feel right. I’m wondering if maybe someone had a similar experience with neck stiffness with headaches and decreased head movement as initial symptoms or if any of this sounds familiar. I know this is not how my Dads symptoms progressed but I don’t know if FALS always follows the same onset pattern? I am following up with my doctor tomorrow.

Thank you all for listening I guess I just needed to write it down.

 

[lgelb]

Very sorry for your loss of your dad.

I am glad to hear you will be seeing your doc. There are several possibilities that it's important to rule out. But I see no reason to think of ALS, genetic or otherwise.

 

[Icholm]

Update: things seem to not be improving. I have left sided neck weakness and have had a few spasms when flexing my neck. Intermittent numbness and tingling alongside fasciculation in neck and jaw on one side. Tongue fasciculations can been seen but only after moving the tongue around a lot. Overall I feel generally weaker like my legs feel light and shake while I stand. Still having shortness of breath and sleeping for hours during the day. I have been referred to the same neurologist who diagnosed my dad with ALS. I’m confused by this progression as I’ve had a clean EMG 5 years ago and fasciculations were deemed benign back then. I’ve been sent for genetic screening but any thoughts would be greatly appreciated!

Sending love out to all!

 

[lgelb]

Not sure what more we can add pending the appointment. ALS does not present with all the diverse manifestations you describe as rapidly as you describe, and there are many systemic features mentioned.

While awaiting the neurology appointment, you could ask your PCP about ordering an at-home sleep study.