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tsr_london

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Joined
Jan 18, 2015
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Reason
Learn about ALS
Country
UK
State
London
City
London
Dear all,

I have been reading this site for over 6 months now and let me start by thanking you for the generous service you provide to worried people like me.

I'm a 29 year old male. My symptoms started in around May of last year, with body-wide twitching and a tight sensation in the left side of my face and my right calf. I saw a neurologist and had an EMG and NCV in June and was told all was OK. I had also previously had an MRI of the brain and spine and CT scan in January and all were normal. Blood tests in June were normal apart from a slight Vitamin D deficiency. After the tests the tight sensations largely abated but the twitching remains to this day.

In October, I got a bad sore throat, along with which came a new set of symptoms:

- Constant phlegm in the throat, which I continue to have. In the beginning I had trouble swallowing it, but that got better after my GP prescribed an anti-fungal medication for oral thrush. There were periods of a few days when I felt as if certain coarse foods were getting stuck in my throat just above the adams apple (no choking or vomiting, however). Otherwise, my swallowing has been completely fine for both liquids and solids.

- The return of the tight feeling on the left side of my face. This was at first constant but it now comes and goes. I also started to get twitches in the same area which come and go, and a feeling of tightness in the throat which was there for a while and has not recurred.

- Muscle pain down my left arm and stiffness in my thumb. The pain has gotten better but the thumb remains slightly stiff. It hasn't affected my ability to perform any tasks, however, including strength tests. I also had increased twitching in my arm and hand for a while but that has gone.

- Fatigue in the left joint of my jaw.

- Accidental biting of my cheeks when eating, particularly the left one. This has continued. I also bit my tongue a few times but this seems to have gotten better.

- The left corner of my mouth feels a bit weird. I feel as if there is saliva there but it doesn't leak out. I also feel excess saliva at that corner when I talk sometimes, and it occasionally forms bubbles. I also have increased drooling while sleeping on my side, particularly the left.

Between October and December, I saw a number of doctors, none of whom found anything serious. An ENT performed an endoscopy and confirmed that there was a lot of mucus in my throat, but saw nothing wrong apart from rhinitis in the nose and sinuses, which is causing the post-nasal drip. A dentist took x-rays and found nothing wrong, and said that the cheek biting might be due to my wisdom teeth having come out (though they've already been out for ages).

My neurologist couldn't find anything either apart from tightness in the neck from sitting at the computer too long. He thinks this is causing the tightness and twitching in the side of my face and my left arm. I had another EMG done in December at my insistence and all was OK. The neurologist said that it is highly unlikely that I will develop ALS in the near future.

Though these tests reassured me, in the past few weeks I have gotten new symptoms that have me worried again:

- When I speak continuously for a long time, my voice becomes hoarse and my throat sore. It gets better when I rest it and clear my throat, however. The ENT says this might be caused by mild acid reflux as I occasionally have heartburn, so I've been taking medication for that.

- Most alarmingly, over the past week my tongue and jaw muscles become very tired and achy whenever I eat or when I speak for a long time. This has developed gradually over a number of days. I still am able to eat, swallow, and talk normally and move my tongue around everywhere. For a while, however, I've been feeling as if I occasionally say my S's with a lisp. My wife hasn't noticed it and I wonder if it's just in my head.

I'd just like to know if you have any advice, particularly on specialists I could see or further tests I could do.
 
Congratulations honey, your symptoms doesn't sound even one tiny bit like bulbar onset or any kind of ALS. You can believe your doctors and keep working with them to find the solution.
 
For goodness sakes, listen to your doctors. You DO NOT have ALS, nothing even sounds like it. YES, it is all in your head. You've had two clean EMGs. Celebrate! PALS on here could only wish the same.
 
Many thanks for taking the time to read and respond to this Tillie and ECPara. I truly appreciate it.
 
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