brentonjb
Active member
- Joined
- Jan 20, 2011
- Messages
- 49
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- FL
- City
- Orlando
Greetings everyone. I could really use a kind soul for some words of advice or even perhaps reassurance. I've been absolutely terrified this past week over symptoms I continue to keep having. I apologize for how long this might be in advance.
I guess I should preface everything by saying that a few years ago I opted to have Orthognathic Surgery for my jaw. Essentially it's where they realign (break) my jaw, inserting plates, so that my bite (teeth) will come together properly. In addition to that, I also had a surgical tongue reduction. That procedure involves cutting the tongue down the center, and removing a bulk portion to make it fit better inside my mouth. I did this because my surgeon said my tongue was very large, and the likely hood that I would develop sleep apnea afterward was very high. Oh how I wish I had a second opinion, but what's done is done.
A few months after the surgery I informed my surgeon that I didn't regain full motion of my tongue. While inside my mouth my tongue seemingly works fine, and has good range of motion, it definitely has problems when sticking it out of my mouth. The tip is essentially limp and has no muscle to it what-so-ever. Meaning for example, I can not move the tip of my tongue either up down to touch/lick my lips.
As for my speech it's ok I suppose. I saw a pathologist for some rehab and told her that I felt as though my words were slurring, particularly my S's, but she informed me everything was about-normal, and although it was not 100%, it had to be due to the tongue reduction.
Fast forward to these past two or three weeks. I began having some serious weakness/numb feeling in my left shoulder. It kinda goes off-and-on through the day. In fact, one day it's really bad, the next I don't even really notice it honestly. It feels like the kinda feeling you get after you've had a shot I suppose. This same feeling will and has progressed down to about my wrist, along with occasional shooting pain. The pain can be anywhere from my shoulder, my elbow, hand and sometimes even left-side of my neck. It's kinda sharp, but mostly very uncomfortable. Likewise I've also had twitching all throughout the arm, and the entire (legs included) left side of my body.
In addition to that I guess the last symptom I'm having is my tongue. I never really noticed it until I felt as though my voice was getting weaker, a little husky, and needing to cough/clear my throat a lot. But my tongue is twitching a lot. I don't actually physically feel it twitching, but when I open my mouth I can definitely see it happening. Also I feel as though there's a lump somewhere in my throat. But I don't appear to have any difficulty in swallowing. Though it's soar / dry.
So after a consult with Dr. Google (which I know is never good for anyone's well-being), it led me to various websites (including this one) mentioning my symptoms as being one of ALS (or Bulbar ALS) as well as other neuro diseases. Needless to say I've been really scared and very anxious. I hope to make an appointment as soon as possible with a neuro, but would appreciate any insight or words those of you who have dealt with this or similar things might offer. Thank you so much.
I guess I should preface everything by saying that a few years ago I opted to have Orthognathic Surgery for my jaw. Essentially it's where they realign (break) my jaw, inserting plates, so that my bite (teeth) will come together properly. In addition to that, I also had a surgical tongue reduction. That procedure involves cutting the tongue down the center, and removing a bulk portion to make it fit better inside my mouth. I did this because my surgeon said my tongue was very large, and the likely hood that I would develop sleep apnea afterward was very high. Oh how I wish I had a second opinion, but what's done is done.
A few months after the surgery I informed my surgeon that I didn't regain full motion of my tongue. While inside my mouth my tongue seemingly works fine, and has good range of motion, it definitely has problems when sticking it out of my mouth. The tip is essentially limp and has no muscle to it what-so-ever. Meaning for example, I can not move the tip of my tongue either up down to touch/lick my lips.
As for my speech it's ok I suppose. I saw a pathologist for some rehab and told her that I felt as though my words were slurring, particularly my S's, but she informed me everything was about-normal, and although it was not 100%, it had to be due to the tongue reduction.
Fast forward to these past two or three weeks. I began having some serious weakness/numb feeling in my left shoulder. It kinda goes off-and-on through the day. In fact, one day it's really bad, the next I don't even really notice it honestly. It feels like the kinda feeling you get after you've had a shot I suppose. This same feeling will and has progressed down to about my wrist, along with occasional shooting pain. The pain can be anywhere from my shoulder, my elbow, hand and sometimes even left-side of my neck. It's kinda sharp, but mostly very uncomfortable. Likewise I've also had twitching all throughout the arm, and the entire (legs included) left side of my body.
In addition to that I guess the last symptom I'm having is my tongue. I never really noticed it until I felt as though my voice was getting weaker, a little husky, and needing to cough/clear my throat a lot. But my tongue is twitching a lot. I don't actually physically feel it twitching, but when I open my mouth I can definitely see it happening. Also I feel as though there's a lump somewhere in my throat. But I don't appear to have any difficulty in swallowing. Though it's soar / dry.
So after a consult with Dr. Google (which I know is never good for anyone's well-being), it led me to various websites (including this one) mentioning my symptoms as being one of ALS (or Bulbar ALS) as well as other neuro diseases. Needless to say I've been really scared and very anxious. I hope to make an appointment as soon as possible with a neuro, but would appreciate any insight or words those of you who have dealt with this or similar things might offer. Thank you so much.