luvmygirl
New member
- Joined
- Jun 14, 2015
- Messages
- 5
- Reason
- Other
- Country
- US
- State
- NY
- City
- Westchester
Hi, I have been putting this off for days because I don't want to offend anyone here with my questions. I am absolutely amazed by your courage and kindness in the face of having this disease, or caring for someone who has it, or having lost someone to it. However, because I am barely able to function due to the fear that I have over this, I thought I'd post. Thank you so much in advance for any advice.
**I've read the 'please read first' sticky **
I'm sorry this is long. I've made sure to use spaces.
**It is important to note that I had an EMG and NCS (I believe) on my arms and legs and hand last month due to numbness and tingling. TESTS WERE CLEAN. This is not why I am here. I never thought of ALS then.**
I am a 44 year old female. I have been having trouble swallowing on and off for nearly a year. Was told by an ENT that it is reflux. I have been battling it ever since but was never very concerned because I was told by my Dr that it was reflux and it was definitely behaving like silent reflux.
**HOWEVER, something has now changed.** It used to just be that it felt like it took food forever to get down my throat and then it would feel stuck right around the collar bone area. Only one time, the first time I ever experienced this feeling, did it feel as it some food had gone up into the back of my nose. I managed to kind of snort it out eventually, but the throat sensation went on for weeks. ENT prescribed something for reflux which I took for a month and it went away. But it returned a couple of months later and has done so ever since - a few weeks I have it, a few weeks it's gone.
The change that began about 2 weeks ago was with drinking. Liquids are sometimes going up into the back of my nose. I then kind of have the water up the nose feeling and it creates a lot (not a ton) of mucous which I have a hard time clearing. I have also almost choked a few times on liquids. I have never fully choked, I manage to catch it and clear it, but it is very scary. It doesn't happen every time I drink but I want to say once per day, maybe every other day.
Also, my voice is cracking. And I often become short of breath when speaking. It seems to sometimes take effort to get to the end of a sentence without having to take a deep inhale.
I don't seem to have any apparent issues with my tongue. I realize there could be weakness of which I am not yet aware, but I don't see or feel any.
I have had some little twitches and spasms around my mouth, but honestly I've assumed them to be from anxiety. I have been twitching all over the last few weeks. Anxiety, I am sure.
So it is the issues with the drinking and the liquid going into my nose and then the mucus at the top of my throat after which I have trouble clearing which is scaring the hell out of me. And the cracking voice and breathiness (my jaw has begun popping last few days, but I don't know that it means anything because for YEARS I have been clenching my teeth at night, HARD - yep, anxiety and stress).
I also seem to have excess saliva, but again, it could be my anxiety over this. I don't know what could be causing this. I know about soft palate weakness (I didn't know anything about ALS until the ice bucket challenge and the Stephen Hawking film made me aware. This is how I came to find out the details of the disease). So if it's not soft palate and swallowing muscle weakness, what could it be?
I am not sure whether I should return to the ENT or the Neurologist and ask her to examine me and possibly have EMG on my face and tongue? Though, as I said, I don't feel any tongue symptom. Would the clean EMG on my arms and legs be a good indicator that my swallowing issues are not ALS, or is this possible Bulbar?
I am terrified. I have never been even close to being this scared in my life. I know it's a relatively rare disease and if I were younger I'd feel better. I am concerned that it's Bulbar, since I have no other issues anywhere else (other than tingling and twitching which isn't ALS, I know).
I have a 7 year old daughter and every time I look at her I have to keep myself from losing it. I am so scared and I am trying very hard to remain clam and think rationally about this. I would appreciate any of your thoughts.
Thank you so very much.
**I've read the 'please read first' sticky **
I'm sorry this is long. I've made sure to use spaces.
**It is important to note that I had an EMG and NCS (I believe) on my arms and legs and hand last month due to numbness and tingling. TESTS WERE CLEAN. This is not why I am here. I never thought of ALS then.**
I am a 44 year old female. I have been having trouble swallowing on and off for nearly a year. Was told by an ENT that it is reflux. I have been battling it ever since but was never very concerned because I was told by my Dr that it was reflux and it was definitely behaving like silent reflux.
**HOWEVER, something has now changed.** It used to just be that it felt like it took food forever to get down my throat and then it would feel stuck right around the collar bone area. Only one time, the first time I ever experienced this feeling, did it feel as it some food had gone up into the back of my nose. I managed to kind of snort it out eventually, but the throat sensation went on for weeks. ENT prescribed something for reflux which I took for a month and it went away. But it returned a couple of months later and has done so ever since - a few weeks I have it, a few weeks it's gone.
The change that began about 2 weeks ago was with drinking. Liquids are sometimes going up into the back of my nose. I then kind of have the water up the nose feeling and it creates a lot (not a ton) of mucous which I have a hard time clearing. I have also almost choked a few times on liquids. I have never fully choked, I manage to catch it and clear it, but it is very scary. It doesn't happen every time I drink but I want to say once per day, maybe every other day.
Also, my voice is cracking. And I often become short of breath when speaking. It seems to sometimes take effort to get to the end of a sentence without having to take a deep inhale.
I don't seem to have any apparent issues with my tongue. I realize there could be weakness of which I am not yet aware, but I don't see or feel any.
I have had some little twitches and spasms around my mouth, but honestly I've assumed them to be from anxiety. I have been twitching all over the last few weeks. Anxiety, I am sure.
So it is the issues with the drinking and the liquid going into my nose and then the mucus at the top of my throat after which I have trouble clearing which is scaring the hell out of me. And the cracking voice and breathiness (my jaw has begun popping last few days, but I don't know that it means anything because for YEARS I have been clenching my teeth at night, HARD - yep, anxiety and stress).
I also seem to have excess saliva, but again, it could be my anxiety over this. I don't know what could be causing this. I know about soft palate weakness (I didn't know anything about ALS until the ice bucket challenge and the Stephen Hawking film made me aware. This is how I came to find out the details of the disease). So if it's not soft palate and swallowing muscle weakness, what could it be?
I am not sure whether I should return to the ENT or the Neurologist and ask her to examine me and possibly have EMG on my face and tongue? Though, as I said, I don't feel any tongue symptom. Would the clean EMG on my arms and legs be a good indicator that my swallowing issues are not ALS, or is this possible Bulbar?
I am terrified. I have never been even close to being this scared in my life. I know it's a relatively rare disease and if I were younger I'd feel better. I am concerned that it's Bulbar, since I have no other issues anywhere else (other than tingling and twitching which isn't ALS, I know).
I have a 7 year old daughter and every time I look at her I have to keep myself from losing it. I am so scared and I am trying very hard to remain clam and think rationally about this. I would appreciate any of your thoughts.
Thank you so very much.