What do you all think?

Status
Not open for further replies.

NathanOregon

New member
Joined
Dec 16, 2020
Messages
2
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
OR
City
McMinnville
Good Morning all. I have been following this forum and want to first say how awesome I think it is that you all take time to address so many anxious concerns. It is very compassionate and empathetic, and I have been praying for a number of the people here that reply regularly. I have read the "stickies".
I am a 40 year old male. My paternal grandfather died of ALS (60 years old), as did his daughter (55ish) and his son (late 40's). My father is still living, and is now 70 years old.
About a month ago I was resting at the end of the day when my left thumb started to twitch. I laughed it off with one of my kids, then went to bed without any worry. The next morning I woke up and was getting ready for work and it twitched some more. I was raking leaves earlier the day before, so I attributed it to that. But, just to be sure, thought I would "Google" a solution. Big mistake! As many have found out, ALS is the first thing to come up. I don't recall having any noticeable weakness at that time, but as weakness is a primary symptom, I started "testing" my arm and grip strength (lifting stuff stuff, maneuvering, I bought a dynanometer, etc), and I think I wore my arm out he first week. I stopped doing all of that, by the way, realizing I was becoming my own worst enemy. I still check my grip strength with the dynanometer (left arm (weak one) is at 125 lbs, and the right is @ 131). My thumb continued to twitch, and in the first few days the rest of my body joined in (random in nature, generally only at rest). I also started feeling weak all over my body. Fast forward a month. My thumb stopped twitching about six days ago. It feels like it wants to twitch, but does not. The rest of me is still twitching all over (mostly feet, calves, back, butt, thighs, eye, etc) mostly in the morning. My left arm continues to feel very weak, and is shaky as well. I spoke to my GP, and because of my family history, he referred me to a Neurologist (I saw the first week), and he did an in-office exam (strength, walk on toes, reflexes, etc- all normal the first week). He did not think it was ALS, but scheduled me for an EMG next month. I am concerned about the weakness that I feel in my left arm/hand. I originally attributed it to a self-inflicted injury caused my my neurotic desire to prove that I don't have clinical weakness, but it hasn't improved in a month's time. My eyes also have changed this last year (floaters in vision, nothing else), but have been examined (if that matters?).
I apologize for the long-windedness, but I was trying anticipate any questions you may all ask. I appreciate any of your insights, and will continue to pray on your behalf.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,684
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I am sorry about your family history. Of course if your dad did not inherit the family mutation whatever it is you can not have it either.

as you know twitching is non specific and non worrisome. Did the neurologist find any weakness or other abnormalities? The difference between your grip strength is not significant. It would even be expected if you are right dominant.

please let us know how the emg turns out
 

NathanOregon

New member
Joined
Dec 16, 2020
Messages
2
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
OR
City
McMinnville
Thanks for the quick reply Nikki! Yeah, I would think that my dad would have gotten it by now if he had the gene? Not quite sure how that works in totality? As for the exam, he did not detect any weakness or abnormalities. He checked strength in most of my muscle groups, all reflexes, etc. He looked for fasciculation in my tongue and other places (none), had me walk on my heals and toes, etc. Nothing out of the normal. I do take magnesium supplements and he said they could mask hyperflexia? He said the ONLY reason for the EMG was my family history. He told me he was so confident that he wasn't going to order blood work. I probably wouldn't be concerned about it if I didn't have the family history. My grandparents had five kids (my dad being the oldest), and all have died accept two (one had cancer, not ALS). I have a large family myself, and can't help but think about their future. I am praying for a break through in the research, as well as contributing to the efforts monetarily.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,684
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
there are many FALS mutations. The common ones are highly penetrant meaning if you have it and live long enough you will get ALS. The average onset ages varies by mutation.

a normal exam is reassuring. i take a lot of magnesium to control cramps and still have some hyperreflexia.

there is a lot of promising research right now especially relating to FALS. you might look at the Angel Fund for ALS and see the work of Dr Brown on sod1, C9 and FUS. You might also be interested in some of the studies for asymptomatic carriers though as your closest affected relative is second degree you would not qualify. Your dad and cousins would though. Even if no one wants to participate it is good to be aware. Dr Benatar in Miami has a study as does columbia ( both require an identified family mutation). Drs Nicholson ( Mass General) and Miller ( ( wash U St Louis) have a study that looks at first degree relatives even if the mutation is unknown. These studies are vital to identify presymptomatic biomarkers so we can find preventive treatments
 
Status
Not open for further replies.
Top