Jbbrasher
Member
- Joined
- Oct 29, 2016
- Messages
- 11
- Reason
- Learn about ALS
- Country
- US
- State
- IL
- City
- Brookfield
Hi All,
This is a follow up post after 2 years... original thread below:
Hi all,
First off, I want to say thank you too all people here taking there time to answer questions for people fearing ALS. The fact that a lot of you have it and take the time out of your day to help people is amazing.
So first off, here is what happened to me in a short but sweet version. I'm going to list everything, even knowing some may not be mutually exclusive.
6-8 weeks ago my pinky toe on my right foot went numb (still is)
4 weeks ago- I had a pretty bad evening/night: my whole right arm felt weak and tired and my elbow hurt. It felt like i had the same amount of streng but can't be sure. That same night I started getting twitching all over my body.
3 weeks ago till now: the first day after that night, all of my muscles (arms and legs) felt weak/tired. I'm still getting twitches all over and the last few days one spot keeps twitching more than most (still twitching all over, including other arm, legs and even butt but hot spot is my right bicep). I still feel general tiredness in both my arms (right seems worse) and legs. It's hard to explain but it's like I just don't want to use them.
I've been to my PCP and got an MRI that came back perfectly clear. I have a neurologist appointment in 2 weeks but the stress and anxiety I'm putting on myself from fear is really hurting me. Can anyone give me some advice?
Forgot to mention that I had my right pinky tingling/numbness about 2 weeks ago. As well as a tingling on my back right shoulder blade and mild tingling on both of my cheeks. Has only happened about 3 times.
Also, my blood work came back and everything was normal except my vitamin D was low (16), and they prescribed me a vitamin d pill (50,000iu) once a week for 8 weeks and potentially low testosterone (going back Monday at 8 am for another test of testosterone)
——————————
After 2 years I still have body wide twitching which includes my face, lips.... just about everything. And now my tongue
The weakness has pretty much gone to my whole body.... some days are better than others.
My main concern is now my tongue, about 1 year ago my tongue started to bother me and I had pain in the upper part of my neck and kind of hurt my ear. I went to a ear nose and throat doctor. Got examined and had a ct all came back normal and they thought it was due to acid reflux. That All eventually went away until 6 months ago. It all happened very quickly. In one day I started having some speech issues and felt my tongue twitching. It was only the right side of my tongue. It felt really weird. Almost like it was coated or burned and swollen. Every once in awhile I would feel tension in it. But I would get these twitches that felt like I got jolted by eltricity...
Fast forward to now and some days it bothers me and some days it doesn’t as much but I’m starting to have panic attacks because of my fear of als. My family is constantly worried why I’m so upset and sad/depressed. I had another emg on my arm and leg about a month ago that came back normal but he couldn’t detect any twitching and he did it rather fast than my previous emg. No emg of the tongue. I’m uploading a video and asking if you can tell me honestly if I have ALS. I hear about tongue twitching looking like worms, which at the moment mine doesn’t look like IMO. But I want some help.
Video: https://youtu.be/RAfyK9tNDfY
Please help
This is a follow up post after 2 years... original thread below:
Hi all,
First off, I want to say thank you too all people here taking there time to answer questions for people fearing ALS. The fact that a lot of you have it and take the time out of your day to help people is amazing.
So first off, here is what happened to me in a short but sweet version. I'm going to list everything, even knowing some may not be mutually exclusive.
6-8 weeks ago my pinky toe on my right foot went numb (still is)
4 weeks ago- I had a pretty bad evening/night: my whole right arm felt weak and tired and my elbow hurt. It felt like i had the same amount of streng but can't be sure. That same night I started getting twitching all over my body.
3 weeks ago till now: the first day after that night, all of my muscles (arms and legs) felt weak/tired. I'm still getting twitches all over and the last few days one spot keeps twitching more than most (still twitching all over, including other arm, legs and even butt but hot spot is my right bicep). I still feel general tiredness in both my arms (right seems worse) and legs. It's hard to explain but it's like I just don't want to use them.
I've been to my PCP and got an MRI that came back perfectly clear. I have a neurologist appointment in 2 weeks but the stress and anxiety I'm putting on myself from fear is really hurting me. Can anyone give me some advice?
Forgot to mention that I had my right pinky tingling/numbness about 2 weeks ago. As well as a tingling on my back right shoulder blade and mild tingling on both of my cheeks. Has only happened about 3 times.
Also, my blood work came back and everything was normal except my vitamin D was low (16), and they prescribed me a vitamin d pill (50,000iu) once a week for 8 weeks and potentially low testosterone (going back Monday at 8 am for another test of testosterone)
——————————
After 2 years I still have body wide twitching which includes my face, lips.... just about everything. And now my tongue
The weakness has pretty much gone to my whole body.... some days are better than others.
My main concern is now my tongue, about 1 year ago my tongue started to bother me and I had pain in the upper part of my neck and kind of hurt my ear. I went to a ear nose and throat doctor. Got examined and had a ct all came back normal and they thought it was due to acid reflux. That All eventually went away until 6 months ago. It all happened very quickly. In one day I started having some speech issues and felt my tongue twitching. It was only the right side of my tongue. It felt really weird. Almost like it was coated or burned and swollen. Every once in awhile I would feel tension in it. But I would get these twitches that felt like I got jolted by eltricity...
Fast forward to now and some days it bothers me and some days it doesn’t as much but I’m starting to have panic attacks because of my fear of als. My family is constantly worried why I’m so upset and sad/depressed. I had another emg on my arm and leg about a month ago that came back normal but he couldn’t detect any twitching and he did it rather fast than my previous emg. No emg of the tongue. I’m uploading a video and asking if you can tell me honestly if I have ALS. I hear about tongue twitching looking like worms, which at the moment mine doesn’t look like IMO. But I want some help.
Video: https://youtu.be/RAfyK9tNDfY
Please help