Old 04-14-2019, 10:56 AM #1 (permalink)
angelo medrano's Avatar
New Member (Say Hi)
 
Join Date: 2019
City: Fresno
State: CA
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 2
angelo medrano is on a distinguished road
angelo medrano angelo medrano is offline
New Member (Say Hi)
angelo medrano's Avatar
Join Date: 2019
City: Fresno
State: CA
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 2
angelo medrano is on a distinguished road
Default Terrified of bulbar

First I would like to thank everyone in this community that is being very supportive because I know your time is very valuable.

I am a 25 year old male. It has been an ongoing battle with my mind for the past five years because ever since I turned 20 I would have twitches all over my body.

When I was 21 I notice that I struggled saying some words and twitching was present in my tongue. A couple years later that went away but I still would notice twitching all throughout my body. Flash forward to 23, I noticed that my shoulders would shake whenever I put my arms down. That was the first time I ever experienced weakness like that and it freaked me out. That also went away but came back like a week ago and recently I have been facing my own challenge, I recently ruptured my patellar tendon and ever since then I’ve been getting weird sensations all over my body.

I try to tell myself that everything is going to be okay but I cannot help myself. I’ve been feeling weak lately along with twitching all over my body. I have been on this website like a maniac reading everything. It started with my body being very sensitive, anywhere I would lay down, my arms would start to get numb easily, when I sit on the Toilet my legs start to get numb within minutes , as if I cut off circulations. My left arm started to twitch like crazy. I never experienced anything like that , it feels like my arm is pulsating and is not letting me sleep, the past two night I haven’t been able to sleep very well either. My shoulders also shake when I put my arms down again. I woke up with my chest shaking today as If the room was very cold because last night it felt like my throat was closing up and it felt like the front of my throat was exhausted from holding my head up all day.

The front of my throat feels like it is swelling up and it feels like it is getting weak. As I move my chin to my chest there is a bit of shaking. My throat has a bit of hoarseness as if I’m losing my voice but can still talk but my throat is raspy. It feels like i have a sore throat but i don’t know, i am so lost right now.

All this has been happening for almost two weeks but the symptoms with my throat have been going on for the past three days, it is very hard to explain how my throat feels because I’ve never experienced anything like this, it just feels like there is swelling all throughout the sides of my throat and it has a bit of tickling feeling in the middle of my throat. My hyoid bone feels weak .

I feel very helpless, could this be a sign of bulbar? I would really apprecitate anyone that responds as I am going crazy thinking about everything that has been going on with me. I have read the stickies and everything but I feel like something is wrong with me and I am seeking guidance.

Last edited by KarenNWendyn : 04-14-2019 at 12:22 PM Reason: Paras
angelo medrano is offline   Reply With QuoteReply With Quote
Old 04-14-2019, 01:32 PM #2 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 7,068
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 7,068
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Terrified of bulbar

You have not described either limb or bulbar onset ALS at all, but why not get some help for the "ongoing battle with your mind?" Five years is a long time to suffer with fear.

I encourage you to see a primary care physician, physician's assistant or nurse practitioner who can examine you to make sure you don't have signs of a virus or infection, and can help you or refer you to someone who can.

Rupturing a tendon is scary, for sure, and can center your focus on your body even more. But you should be spending your life in way more fun places than here. The only one who can start that ball rolling is you, and the long healthy life you can lead, the life that PALS don't have, is definitely worth that call.

Best,
Laurie
lgelb is offline   Reply With QuoteReply With Quote
Old 04-14-2019, 01:35 PM #3 (permalink)
ShiftKicker's Avatar
Moderator
Forum Moderator
 
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,990
ShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond repute
♥ ShiftKicker ShiftKicker is offline
Moderator
Forum Moderator

ShiftKicker's Avatar
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,990
ShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond repute
Default Re: Terrified of bulbar

Hi there- you report many sensory issues. This points away from a disease that affects motor neurons. Please read here: READ BEFORE POSTING! Answers to common concerns about possible symptoms! to reassure yourself some more. Please read it very carefully all the way through and make sure you really tae it in that your symptoms are not something that people with ALS can help you with.

You also do not indicate if you have visited with a doctor. Given the fact you've had years of worries over your health, it appears to be time to address those worries with a health professional and start working on ways to handle your anxiety while you look for a (completely non-ALS) cause for your symptoms.

Best wishes
ShiftKicker is offline   Reply With QuoteReply With Quote
Old 04-14-2019, 03:12 PM #4 (permalink)
angelo medrano's Avatar
New Member (Say Hi)
 
Join Date: 2019
City: Fresno
State: CA
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 2
angelo medrano is on a distinguished road
angelo medrano angelo medrano is offline
New Member (Say Hi)
angelo medrano's Avatar
Join Date: 2019
City: Fresno
State: CA
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 2
angelo medrano is on a distinguished road
Default Re: Terrified of bulbar

Thank you so much for replying, I have the most respect for everyone that takes there time to respond to any concern that a person is having.

Rupturing my tendon took me to the edge, it made me focus on my body way too much. Making me focus on every little thing that could possibly be wrong with me. Nothing has made me happy since the day it was ruptured. I do live in fear but i also have had some good days. This process that i have been going through though has made me see nothing but dark days. I will take your advice and see a physician because it does feel like my voice is becoming raspy, thats what ultimately led me here along with the twitching symptoms and mild weakness that has been on going. Iím not going to lie, Iím still very scared even though you beautiful people have told me that it doesnít sound anything like ALS but the mind is very strong. I did ask the doctors from the day of my surgery which was about three days ago about my symptoms, I only had twitching symptoms and mild weakness in my shoulders at the time but they all said it was anxiety. I have been thinking this all due to anxiety as well but then the raspy voice came after my surgery and my throat feels like it being pressed on along with a little bit of shakiness when i put my chin on my chest. Also experiencing more twitching in my tongue and neck. That is what made me want talk about my symptoms. I just never experienced symptoms like these. I hope I didnít bother yíall too much. I will also read that link again.
angelo medrano is offline   Reply With QuoteReply With Quote
Reply

Tags
back, bulbar, cold, feeling weak, ice, night, reading, shaking, sleep, swelling, symptoms, tongue, twitches, twitching, voice, weakness, website, wrong


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Terrified Bulbar or Limb Onset? Varying Symptoms rockyman01 Do I Have ALS? Is This ALS? 8 02-09-2019 02:16 PM
Still terrified I have als!! HarryY Do I Have ALS? Is This ALS? 5 09-20-2017 12:07 AM
Teenager, terrified of bulbar Streetfish1 Do I Have ALS? Is This ALS? 8 05-11-2017 08:02 PM
New and terrified glennajo General Discussion About ALS/MND 9 09-01-2008 12:49 PM


All times are GMT -5. The time now is 07:47 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016