19 and fearing from familial ALS

Status
Not open for further replies.

Resalder

New member
Joined
Dec 23, 2019
Messages
2
Reason
CALS
Diagnosis
12/2019
Country
TR
State
TR
City
Karabaglar/Izmir
Hi. My families story with ALS started 20 years before, with my grandfather's death from it. We didn't think it was familial because he was the only one. 2019 August, my mother caught up this disease and disease progressed rapidly in this time. She is now at hospital for feeding tube operation. My question is, i realized some weirdness in my body lately. I am only 19, and fearing from it. These are my symptoms:
1. Twitching. Started 3-4 weeks ago, all over my body. Stops with movement.
2. Weirdness in my right hand fingers. It feels different. Some funny feeling, buzzling, and shaking when i force. But same shaking doesn't happen on my left hand. Also i feel weirdness when i use mouse, pen or joystick. Only told shaking and weirdness to neurologist.
3. Temporary pain, preassure on my both arms. Mostly on left side.
I went to neuroglist yesterday with this symptoms. He is professor and has mostly specialez at ALS. He did needle to test my twitching on right Side(i don't know well, it could be EMG). It was good. Then he talked about stress, bfs and nerve entrapment at neck. He didn't think it was ALS.
Today weirdness on my right hand and twitching made me panic once more. I started to test my body. This is what i saw:
1. Left hand twitches slightly but i can't feel it. I have to look carefully to realize it. Doesn't stop with movement. I don't know if there's vein on there, but it fears me.
2. When i open my fingers full, i see some weirdness on my left hand. It may be muscle wasting.
3. Right hand still same.
-My question is, could this be ALS? Can ALS cause weirdness on one side, and muscle wasting with twitching on other side as first symptoms?
-Is my nonstop twitching on left side normal? Because i didn't realize it before. It isn't happen on my right side so i am fearing from it.
I am thinking to neurologist one more time but will wait for few days.

I forgot to tell. Weirdness started new, 3-4 weeks after twitching. Comments i read about twitching made me relax in this time, but other new things made me panic again.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,368
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Hi so sorry about your mother

no it doesn’t sound like ALS. Yes needle test is emg.
you saw the neurologist yesterday. If you had wasting they would have seen it. You don’t need to see them again for the same thing.

i do not think you live in Brooklyn. If you do remove your address if you don’t fix your location.

your mom should be gene tested. This is valuable information for you and anyone else in this bloodline
 

Resalder

New member
Joined
Dec 23, 2019
Messages
2
Reason
CALS
Diagnosis
12/2019
Country
TR
State
TR
City
Karabaglar/Izmir
Thank you for your response.
Neurologist did EMG to my left leg, and right hand. Because twitching was just happened on leg, and i talked about right hand. He didn't test my left hand. My doubt comes because of that.
They did test my mother but we don't know the gene yet. All we know is it isn't SOD1.
Talked about gene testing yesterday, they will do it in future.
Thanks for warning, i fixed it.
 
Status
Not open for further replies.
Top