After 15 years of twitching...something new causing worry.

bozzy

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Good evening. This is my first post to any ALS forum, and I apologize for the crazy length. Hoping that there may be some similar stories that I might draw some level of information from. I truly admire the selflessness that so many of you have for others.

Quick background:

I have been a healthy 48 year old male with three beautiful daughters (21, 19 and 16). In 2005 I had noticed cramping in both arches of my feet when I would give the kids baths which would go away once I adjusted my feet. In 2006 I noticed constant twitching in both calf muscles and arches and outside of feet. I panicked of course. After going to my doctor, he suggested the condition was most likely benign, but sent me to a neurologist for further review. The twitches expanded to affect many parts of my body at this point and prior to my neurologist visit I found AboutBFS and realized there were many with similar symptoms.

The neurologist exam was negative with zero concerns. Since I first noticed my twitching, I have twitched 24/7 in various locations. I am twitching now. e

In 2011 I had an MRI of my brain and cervical spine due to some other tingling and numbness in my chest. Both were clear with some indication of pinched nerve causing the issue.

Fast forward to a few weeks ago where I noticed I was having to clear my throat numerous times during the day while talking. A couple of weeks ago, while on a trip with my family I had a scary swallowing issue that I have never experienced before in my life. I literally was unable to swallow. It wasn't choking, it was literally the inability to even start a swallow, like I had forgotten how to. This happened only once 2 weeks ago during the last bite of food. I will suggest I was eating super fast and was struggling with gas. I made the mistake of Google and found the term dysphagia.

I had found a few posts from others in this forum about similar symptoms, but I never was able to find if any of them received a diagnosis to what the problem was.

Now, I work out, run etc. and have noticed zero decline in any of my fitness. I actually don't have any speech issue that I am aware of, an occasional feeling like my voice is sore but no issue with volume, pitch etc. I do not feel currently that I am having to clear my throat near as much. At one point my daughter had asked me if I was sick because I was clearing it soft frequently.

I went to the doctor last week and he did not seem at all concerned by what I had told him. I did describe that I was kind of able to reproduce the experience when I was under so much anxiety. I could "will" the same symptom to occur. ( I am not even sure that is possible). But, since then here is what I am noticing:

1.) My mouth feels incredibly dry, I assume this is from anxiety and the constant swallowing I am doing. It is way worse when I exercise and have found the swallowing issue manifests itself near the end of exhausting fitness classes.
2.) My tongue clearly now has teeth indents on both sides and the right side is worse than the left now because it is being crammed up into my teeth on the top at night. My tongue actually feels like it burning and sore when I wake up, but that goes away shortly after getting out of bed. I do not have any issue with articulation. I do get scared that my right side of my tongue is changing shape a little and the pattern on the top of the right side does look different than the left, but feels like it coincides with the burning feeling in the night,
3.) I have zero issues first thing in the day, but as the day progresses I feel a tight, almost burning feeling in my throat, mostly at the back, but sometimes around the palate too. It comes and goes.
4.) I have noticed that when my throat gets this burning and tight feeling, that is when I notice the sensation that starting a swallow is going to be a problem. However, what is bizarre is that I have zero difficulty swallowing water, and with the exception of once or twice food, the difficulty appears to be basically swallowing nothing, I guess saliva but most of the time I don't feel like have any to swallow.
5.) I do often feel as though I have something in my throat too with this feeling, like a lump even though there isn't one that I know of.
6.) My wife and kids say I am the loudest snorer on the planet and my wife has expressed some concern with my snoring as I sleep with my mouth open. I also have had years of upper abdominal gas that I often struggle to release. Not sure if that can cause GERD, or if GERD can even cause the issues I am experiencing.

We were out for dinner tonight and the burning tight throat sensation had subsided before dinner and I had zero initiating a swallow. I actually find that when I am busy, or at the gym and not thinking so carefully about it, I don't notice it.

The only term I keep coming back to is Oropharyngeal dysphagia but I have no clue what that would actually cause, and to be honest if that is what my issues have been. I do wonder if the constant anxiety, checking my tongue 50 times a day for changes and constant test swallows is just making the issue worse.

If I have wasted anyones time, I sincerely apologize. I am just deciding now what my next step will be. Thinking maybe a second trip to my doctor this week.

Best regards,
Peter
 

KarenNWendyn

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Please read this first if you have not already done so: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms!

You have not described ALS. Twitching is common, nonspecific, and meaningless in the absence of muscle function failure which you have not described. And over 10 years of symptoms with normal neuro exams is reassuring.

The recent swallowing troubles could well be from reflux. You might also have sleep apnea with the snoring. I’m sure anxiety is also making things worse.

So see your doctor about your symptoms, but it’s looking like reflux and possible sleep apnea. Not ALS.
 

lgelb

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If you sleep w/ your mouth open, you are swallowing air and likely not sleeping well enough to awake completely refreshed. And of course air in your stomach can contribute to GERD, discomfort and even weird sensations while swallowing.

As for having occasional difficulty initiating a swallow, many of us have that. That it does not manifest when you do not think about it suggests it is not cause for concern.

If you snore loudly, sleep apnea or blocked sinuses are always a possibility.

Superimposed on these things is your anxiety, demonstrated by checking your tongue ~50x/day.

So I'm totally with Karen -- talk to your doc about these things and stop googling as your symptoms will only feed on themselves. Break the cycle now.

Best,
Laurie
 

bozzy

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Thank-you both for your thoughtful replies. Karen - thanks for your feedback. I did get a chance to read that summary. It was most helpful.

Laurie, you are quite accurate actually. I have woken up 80% of the mornings with a clogged right nostril for some significant time and I do often get the feeling of nasal drip even when there isn't anything visibly there.

Agreed that anxiety has fed into this, significantly. I think it is possible that anxiety is also causing the feeling of voice strain, given I can still sing at full range.

You two are saints in my opinion. I will monitor, see my doc this week again and keep connected should the need arise.

Peter
 
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