Kinabe
Member
- Joined
- Mar 6, 2019
- Messages
- 17
- Reason
- Lost a loved one
- Diagnosis
- 00/0000
- Country
- US
- State
- ME
- City
- Aroostook
Hi,
Thank you in advance for your time. I've read many of the posts here and I am in a similar situation.
My grandmother died at age 76 from ALS, and it has given me a lot of anxiety over the past 10 years related to it. I also had a more distant relative (a cousin of my father) who I believe also had ALS, so it may very well be familial.
I will also note that I have suffered from Health Anxiety for years, and have "convinced" myself over the years of a lot of illnesses....
So here's my story.
Over the past several months, I've had a lot of twitching present on my body in different areas. It actually started around the 1st of the year when I got inside from snowblowing and noticed the muscle that usually diminishes in ALS was twitching rapidly. It continued off and on that afternoon, but didn't return.
I then started getting a lot of twitching over the next few weeks in my feet, ankles, and calves. That peaked around the middle of February but has mostly subsided now. I also had random twitching at any place on my body, but not consistently. Just jumping around intermittently.
I also have a bad shoulder with a SLAP injury (labral tear), and I worked that shoulder hard for a few days roof raking show. For two nights that shoulder blade was twitching a lot at night and keeping me awake with fear, but it stopped after the two days and hasn't returned for over a week... hopefully that's all it was.
What has me extremely panicked now is something new. I started having a "weird feeling" on the front right tip of my tongue a few days ago. Yesterday I noticed when I curl/rull my tongue like a hotdog, that small spot on the front of my tongue first does the curl but then "sags" and won't maintain the curl on that one spot.
I went to the Dr when my twitching was really bad several weeks ago and they referred me to a Neuro because of my family history, but I can't get into the Neuro until May 7th.
Now I'm panicking every day and can't sleep well at night because I wake up with my heart racing etc.
I have no clinical weakness. I can walk on toes, heels, walk heel to toe, close 200lb hand grippers, do 30+ pushups... no clinical weakness.... I do feel like my muscles get more sore than usual in my workouts... but I believe that's not really significant for ALS...
The only weakness I have experienced is this weird thing with my tongue, and that spot on my tongue feels almost ticklish/tingly. The spot that feels weird is smaller than an eraser on a pencil. No twitching in my tongue....
Hopefully this is all anxiety related or explainable in some other way than ALS... I am looking forward to the Neuro vist, but scared...
Give me some hope here....
Thank you all and I'm not here to argue or convince anyone that I have something. I'm just sharing my experience.
Thank you in advance for your time. I've read many of the posts here and I am in a similar situation.
My grandmother died at age 76 from ALS, and it has given me a lot of anxiety over the past 10 years related to it. I also had a more distant relative (a cousin of my father) who I believe also had ALS, so it may very well be familial.
I will also note that I have suffered from Health Anxiety for years, and have "convinced" myself over the years of a lot of illnesses....
So here's my story.
Over the past several months, I've had a lot of twitching present on my body in different areas. It actually started around the 1st of the year when I got inside from snowblowing and noticed the muscle that usually diminishes in ALS was twitching rapidly. It continued off and on that afternoon, but didn't return.
I then started getting a lot of twitching over the next few weeks in my feet, ankles, and calves. That peaked around the middle of February but has mostly subsided now. I also had random twitching at any place on my body, but not consistently. Just jumping around intermittently.
I also have a bad shoulder with a SLAP injury (labral tear), and I worked that shoulder hard for a few days roof raking show. For two nights that shoulder blade was twitching a lot at night and keeping me awake with fear, but it stopped after the two days and hasn't returned for over a week... hopefully that's all it was.
What has me extremely panicked now is something new. I started having a "weird feeling" on the front right tip of my tongue a few days ago. Yesterday I noticed when I curl/rull my tongue like a hotdog, that small spot on the front of my tongue first does the curl but then "sags" and won't maintain the curl on that one spot.
I went to the Dr when my twitching was really bad several weeks ago and they referred me to a Neuro because of my family history, but I can't get into the Neuro until May 7th.
Now I'm panicking every day and can't sleep well at night because I wake up with my heart racing etc.
I have no clinical weakness. I can walk on toes, heels, walk heel to toe, close 200lb hand grippers, do 30+ pushups... no clinical weakness.... I do feel like my muscles get more sore than usual in my workouts... but I believe that's not really significant for ALS...
The only weakness I have experienced is this weird thing with my tongue, and that spot on my tongue feels almost ticklish/tingly. The spot that feels weird is smaller than an eraser on a pencil. No twitching in my tongue....
Hopefully this is all anxiety related or explainable in some other way than ALS... I am looking forward to the Neuro vist, but scared...
Give me some hope here....
Thank you all and I'm not here to argue or convince anyone that I have something. I'm just sharing my experience.