25 yo Scared of Bulbar Onset

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Scaredfromrgv

New member
Joined
Jul 31, 2021
Messages
4
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
TX
First of all, my prayers go out to all of you currently fighting or who have lost someone to this disease.

I just want to make a quick short summary for everyone, as I know that not everyone would like to read an endless post. 2 weeks ago I went to the hospital due to having some high blood pressure (reason being is that I suddenly had numbness and tingling on the entire right side of my body) and was thankfully let go the same day, however, 3 days after going to the doctor, I began to develop twitches in my left calf that has sporadically seemed to move to both legs and sometimes to my left and right arms and I sometimes have painful cramps.

I am also feeling as if something is constantly lodged in the right side of my throat and I can't seem to stop clearing my throat. I am so terrified of it being Bulbar onset as I lost my uncle to this horrible disease and saw what that put my family through and I'm afraid I'm reliving the same course. I was also recently diagnosed with anxiety and I know that this is likely why I can't stop looking on here and have recently gone to the doctor and will be getting the results of my in-depth blood analysis this coming Monday. Thank you all again for reading this, and I'm sorry to potentially waste your time, I just wanted to see what y'all think about this.
 
Hello- please read here: Read Before Posting

It looks like you searched for twitching online and it brought you here. The above link explains why simple twitching is not enough to concern a doctor about MND. The remainder of your reported symptoms and the all over pattern also point away from ALS, per the link above. It looks like you'll need to keep working with your doctors to figure out what's going on, but ALS is not in the picture.

Let us know how things go after your next appointment, as it helps with other folk anxious about ALS who come searching here.
Take care
 
I'm sorry for the loss of your uncle to ALS. I'm sure that experience is what is driving your ALS fears. Read the link Shiftkicker gave you and put ALS out of your mind. Keep working with your doctors to figure out what really is going on.
 
Thank you both for your replies and thank you Rmt, it was something that unfortunately likely did increase my fears of this disease and i'm currently working with my doctor to try to fix my fears, I'll post an update in regards to my exam as soon as I can, thank you guys.
 
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I didn't mean to post this soon, as i'm still waiting for results, but I am currently freaking out as I just woke up this morning with wrist drop. My wrist was unable to move and I didn't know why. I was able to get my wrist moving again after about 2 minutes but it scared me so bad that I feel i'm about to have a panic attack, is this normal? I have been experiencing twitches in my left shoulder as well and my finger twitches nonstop, i'm so scared. It feels like my twitches have gone on to affect more widespread areas but this is the first time i've seen this happen to me.
 
There is still no one here whose ALS began as you describe. If you are on new blood pressure medications, or if you should be on meds but are not, this can be a factor. Either way, temporary loss of function is time to see a doctor, not a forum.
 
You are certainly right, i've been refraining from posting on here because i'm trying to deal with my anxiety head on. I apologize for that, it was just a scary symptom to wake up with and I was previously diagnosed with thoracic outlet syndrome/carpel tunnel, so now thinking more objectively, I will go to the doctor and make sure this is the last time until I get an update. My apologies.
 
scared - you are on overdrive. ALS weakness does not happen when you wake, then get better after a bit. That is the result of you sleeping in the wrong position and maybe pressing on a nerve, and waking with a 'dead hand' which then resolves. That can happen to any healthy person.

Please, see a doctor with any concerns you have.
 
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