Old 11-06-2018, 01:47 PM #1 (permalink)
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Default Looking advice on diagnosis

Hello dear people,

First and foremost I have to say that I have utmost respect for everyone who replies to the posts of us health worriers - this forum has helped me immensely when looking for information about this terrible illness.

My story is this, I am 28 years old male, I have got a PhD in nuclear physics (funky stuff). I have had severe health anxiety since about two years since in a time of one year my father has died from bowel cancer ,my wife had a miscarriage and my mother was diagnosed with Parkinsons. Quite an unlucky time. Obviously, after the emotional stress came the anxiety about myself. After myriad of tests done by various specialists I have been diagnosed with silent reflux and IBS. I have been seeing a CBT specialist to manage my anxiety ever since. And I have been in quite a happy place for a while.

About two months ago I to twitch in my finger, that moved the finger through the whole joint, after few days I have started to feel body-wide twitching. Some days it is barely noticeable, some days I can feel myself pop all-over. It is almost always lasts for a split-second and then moves to some place else. No muscle left un-turned.

Now, I am much calmer in ways of managing my health anxiety, but obviously the twitching has left me worried. As it hasn't stopped I have started investigating and obviously this is how I have ended up on this forum.

I am originally from Finland, but I currently live in a super small country called Estonia. With a million of residents I have been advised that there are probably only about 50 cases of ALS in the whole country at this very moment, therefore getting a diagnosis is tricky. We don't really have experts on the disease. So I am here just to ask for the advice and the symptoms in pursuit of a definitive diagnosis.

Since the twitching started I have started to have issues with swallowing - it seems that I have to work harder to make the food go down the throat / I have a constant mucus that is stuck in my throat that I can't swallow or cough up. I very well know that this might be due to reflux, so I am taking antiacids that don't seem to help with the problem.

Since the twitching started I have been tested for vitamin deficiencies (test showed mild deficiency in Vitamin D and borderline levels of Chloride and Calcium). Negative lyme, negative ANA screen. I have seen two neuros - both confirmed that there are no weakness, no atrophy, no pathological or brisk reflexes, clean MRI as well.

EMG is somewhat of the mystery test since very few hospitals actually do it and both of the neuros confirmed me that there is no need for it. One neuro even said that "I am not the type" for ALS, which I found somewhat puzzling. I would have been happy with the diagnosis of BFS, but since my swallowing / mucus issues have gotten a bit worse. I have a constant feeling of mucus draining down my throat, the throat itself is tight. Sometimes it hurts when I swallow. I also slur tiny bit, but I know well enough that I notice is when my anxiety acts up.

So the question is, whether any of this sounds remotely like ALS and whether I should push for further diagnosis?

Thank you kindly,
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Old 11-06-2018, 02:14 PM #2 (permalink)
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Default Re: Looking advice on diagnosis

You totally know we will say there is no single ALS symptom in your post.

Back to your doctors and be honest with them about your fears and let them work with you, but you need to leave here for good. Try blocking this site. All the best.
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Old 11-06-2018, 02:14 PM #3 (permalink)
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Default Re: Looking advice on diagnosis

I think you have answered your own questions. Antacids have their own down sides, so if they're not helping (have you actually been evaluated for/diagnosed w/ reflux? Allergies?), maybe discuss discontinuing with your doc and go for papaya, pineapple juices, more liquids, a dry throat saline spray, thought to an antihistamine, etc. Room humidification may help as well when you are home.

We will not see ALS in this -- and I don't think you do, either.

Best,
Laurie
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Old 11-06-2018, 02:23 PM #4 (permalink)
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Default Re: Looking advice on diagnosis

Thank you for your kind answers. Yes I have been diagnosed with reflux via endoscopy (even with suspicions of Baretts esophagus, which came out false). Been on/off on antiacids for a almost a year.
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Old 11-06-2018, 06:06 PM #5 (permalink)
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Default Re: Looking advice on diagnosis

Just wanted to say thank you for your messages and that I shall be leaving this forum for good.
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