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luvmygirl

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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 forgot mention that I don't seem to be having any slurring. I'm sure if I did I'd know. Sometimes I think I am having trouble with 's' words but I'm sure it probably just my fear and the fact that I am focusing on my speech because of it. Thank you.
 
I would go back to ENT. From what I know of bulbar onset this is not it.
No if you had pure bulbar disease it is possible to have a normal extremity EMG though many who only have bulbar symptoms do show ALS in their limb EMGs as it is sensitive and can show problems before the patient notices.
Hopefully the ENT can help you with your symptoms.
 
Nikki's right. I don't think you have to worry about bulbar. I have it and I have a weakened soft palate. This causes extreme "nasal" quality speech. If I try to blow out a match, for example, most of the air comes out my nose instead of my mouth. In the length of time you have been experiencing these symptoms, if it were indeed bulbar you would likely be slurring your speech by now and believe me when I say you would know it and it would be obvious to those around you.

If your swallowing problems are due to reflux, you could have narrowing of your esophagus and there is a procedure to have it stretched to make swallowing easier. My brother has had to have it done twice.

Best of luck.

Vince
 
Thank you Vince and Nikki for your prompt replies. I was concerned that these symptoms may be very early ones. I will go and see my ENT. Thank again, so much.

Wishing you both the best. Your selflessness and willingness to help here on this forum while fighting this disease is so amazing. Amazing doesn't even begin to describe it.
 
My husband has bulbar onset (over 3 years now) and it did not present the way you describe, at all. His started with slurred speech.....and others noticed it first, not him. His onset strictly involved the tongue. His EMG was given in his extremities, not in his tongue or anywhere around the bulbar region. It proved positive for ALS. Your EMG was clean, so you have nothing to worry about. It would have shown abnormalities, even if your symptoms were bulbar in nature. Relax and good luck!
 
Thank you for your time and response, ECpara.

I actually saw my neuro today as a follow up regarding my C spine MRI (numbness and tingling in hands and feet - it was normal.)

I discussed with her the swallowing issue. She did an exam and tested my tongue strength, looked for fasciculations, tested my lip and facial muscle strength (I think that's what she was doing) tested my neck and shoulder strength, arms, legs, reflexes (which she has done before). She asked me a lot of questions, like am I having any trouble with my eye sight. She said that everything she looked at in her exam was normal and good. She would like me to have a swallow study done, which I will.

I asked if she thought nerve testing of tongue, face would be a good idea. She told me that they cannot test the tongue and the best way to test swallowing muscles is by a swallowing study. I was under the impression that an EMG of the tongue could be performed. Am I incorrect? Of course, I did not challenge what she said. I am just curious. According to what you wonderful folks here have advised, a clean EMG of arms and legs (which I had last month for numbness and tingling) is a good indicator of no ALS.

Just confused (and yes, a little worried about the swallowing) by what my neuro said about not being able to test the tongue, as I thought I've read that people have had their tongues "needled". Not that it sounds like any fun. I don't have any interest in challenging or disrespecting anyone here or my doctors, but I do want to be properly informed because, as you all know, we need to be our own advocates.

No rush to respond and I completely understand if no one responds at all because I see you have your fair share of anxiety sufferers here :)

Thank you again for your valuable time.
 
Perhaps she misspoke or you misheard. It sounds like she was saying the best test of swallowing is a swallow study which is very accurate. Diagnosed patients have swallow studies to look for issues with swallowing they don't have EMGs for that. Yes it is possible to EMG the tongue but the swallow study will give you better information
 
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