Scared about atypical ALS onset

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New member
Apr 4, 2019
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I have come accross this forum and am astounded by the positive attitude and supportive nature of those diagnosed with this disease towards others. Not to mention the determination held by so many to continue living as normal a life as possible. I find you all truly inspirational.

I first off want to say that I suffer from health anxiety. I have done for years and if what I describe sounds nothing like ALS the last thing I want to do is offend anyone, but I am just lost at the moment.

I started having widespread fasciculations and cramping feelings in June 2018. At the time I was concerned but never really considered anything sinister. This has continued and resulted in numerous blood tests all of which were normal. I was referred to a rheumatologist in December 2018 and had an examination of tone, strength, reflexes etc and was told there was no evidence of disease.

At this point I was relieved, but the pains and twitching seemed to get worse and I went back to the GP who tested for creatine kinase levels, which came back elevated at 600, and so was referred to a neurologist for further examination. The GP said he was not concerned but wanted to rule out unlikely causes. At this point I again felt reassured, as in the 10 months of this I have developed no muscle weakness.

But then came some symptoms of swallowing problems. Four weeks ago, I started noticing a cough after eating, I ate the meal and then a few minutes later would feel a tickle in my throat and start coughing. The cough has persisted and I now notice that when I drink water, at times I feel as if some small drops are being aspirated. Again, I don't choke or gag and can continue to drink, but when I finish I have the persistent irritation and need to cough.

I have been to see two doctors regarding this, both of whom think the cause is GERD and LPR, and admittedly I do have a lot of reflux problems, but it is the aspirating of water that worries me greatly. I am convinced that this is either the start of bulbar ALS or related to my other muscle symptoms and is an atypical progression.

I guess I have a few questions for those in the forum:

1. In ALS, is it likely that dysphagia would present before any signs of dysarthia? I have a hoarse voice but I do feel this is from the coughing. As far as I can tell I don't have any tongue weakness or chewing problems.

2. With dysphagia in ALS, can it come and go or wax and waine? Or is it steadily progressive, and how quickly would it progress?

I am 30 years old and have a 2 year old son and my wife is expecting our 2nd child. I am struggling to cope with the worry that I might not see them grow up and feel it is tearing me apart. Any advice would be greatly appreciated.

Thank you

GERD causes all kinds of problems including aspiration.

Sounds like you might need some meds to treat it.

I don't see anything "ALS" in your post.

You need to see an ENT or gastro.
There is nothing in ALS that comes and goes. It just keeps coming and once you lose something it is gone. This is also not a forum to work out your health anxiety. We are not physicians and can't diagnose anything over the internet anyway. Work with your doctors and listen to them, not your anxiety.
Thank you for your replies.

I agree, I will leave the forum.

Thanks and best wishes
Hello again

I just wanted to say thanks for the advice received and update that I have began meds for GERD and am hoping to see an improvement. I am still worried about my symptoms, but am hoping that their intermittent nature and 3 months without progression or development of dysarthia is a good sign.

Thanks again
Hello Again

So since my symptoms began at the beginning of March nothing has changed, there has been no progression or improvement despite GERD medication.

I have seen three consultants, an ENT, a gastroenterologist and a neurologist. The ENT found nothing wrong, no structural abnormalities to explain my symptoms, and CT scan of my sinuses was clear. He recommended seeing the gastroenterologist for acid reflux potentially being the cause.

The gastro carried out an endoscopy and said that everything looks normal, and has suggested that I may have reflux that just is not severe enough to cause damage/inflammation. Advised taking PPI for a bit longer.

The neurologist carried out a full clinical exam and did not see any sign of a neurological problem. He said it was all normal, but all he did was check my jaw reflex, look at my tongue and throat with respect to my bulbar concerns. He said that four months of non progressive swallowing problems as an isolated symptom is not a sign of MND, and suggested that my anxiety is playing a big part.

I am trying to accept these findings from all of these doctors, but my symptoms are still happening. I still feel that certain foods get stuck in my throat, and that after drinking fluids I frequently cough and feel an irritation which I can't stop thinking is aspiration. I'm not sure if I should push this further and ask for more tests or see a different neurologist for an EMG, I still have worries about bulbar onset ALS. The neurologist was not an ALS specialist after all.
Hello OP
as someone said earlier ALS symptoms don't come and go. they come and stay.

I'd suggest, if it makes you feel at ease, to do all the tests that u feel like, but it really doesn't sound ALS, not even a rare form.

as you suffer from anxiety, the problem may be all there. Again I am not a doctor so wish you to find a specialist that puts your anxiety at ease.

All the best
As only one person with bulbar onset, from my experience what you're describing does not sound like ALS. Aspiration is not an irritation. It is food or liquid in your lungs, and it is full on scary, not just a little irritation. Swallowing problems are initially a function of weak tongue and chewing muscles, and if the problem is only in your throat then I would continue to work with your ENT. You are not showing the serious signs of ALS, which if it were bulbar would include obvious slurring of speech. Please move on from this. I've dealt with anxiety and I know you have to break the cycle rather than continue to feed it.
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