Old 01-11-2019, 03:30 AM #1 (permalink)
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Default Back after 5 years... still worried

In 2012 fasciculations started. I also have pin and needles and some other little things. Went to the neurologist, he did some tests and diagnosed me with BFS. Slowly my worries disappeared and I went on with my live. I'm 42 years old now and a mum of 4 kids.

But... since 2014 I got some swallowing problems. Potatoes, rice, pasta, bread are difficult for me. I do not have a problem with fluids. I eat very slowly, little bites at a time and now and then I choke. The hardest meal is diner, when my 4 kids are at home and they tell about school etc. Because I need to concentrate very good, I choke more often then.

So now I'm back, worried about what is wrong with me. Is it really BFS or is it ALS in a slow form? Or are there other diseases who make you get fasciculations and swallowing problems? It is developing very slowly, but I'm scared again about my health now.

Of course I went to the doctor. My thyroid was tested and they send me to the hospital again for more tests. My appointment is on the 16th.
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Old 01-11-2019, 04:06 AM #2 (permalink)
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Default Re: Back after 5 years... still worried

That would be a very slow form indeed. I would think not.

I would consider consulting an ENT (throat specialist) if the testing to come does not provide enough information. Of note, it may not be one condition that explains both the swallowing problems and fasciculations. Since swallowing issues are more serious, it is those that I would focus on right now.

Has your swallowing changed since 2014?

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Old 01-11-2019, 11:40 AM #3 (permalink)
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Default Re: Back after 5 years... still worried

Thanks for your reply.

Yes it did change, it got worse, very slowly. I have had some light problems with swallowing since 2013/2014, but I got worse over the time. Now, I can not swallow meat, potatoes a little bit en bread is also a problem. I'm very worried about that, what if it gets worse and worse and I can't eat any more?

I know it could be two different things, but my feeling says it is not. It both started a few years ago. There is a condition called PSMA in the Netherlands, which is not ALS but it can develop like ALS after a few years. But maybe it is a total different disease, that is possible of course.

I have an appointment with an ENT Januari the 16th and if he can't find the cause my doctor will send me back to the neurologist.

By the way, my voice is soar since 5 years also. I went to a logopedist for that, she couldn't fix that as well so that is something that also bothers me, but it is not as scary as swallowing is...
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Old 01-11-2019, 03:19 PM #4 (permalink)
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Default Re: Back after 5 years... still worried

Sounds like a good plan. Let us know how the ENT appointment goes.
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Old 01-23-2019, 12:39 PM #5 (permalink)
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Default Re: Back after 5 years... still worried

Seven years of fasiculations before onset would make for an extremely rare presentation case. The odds are dramatically in your favour. Try not to worry too much and just wait for the appointements with the experts.
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Old 01-23-2019, 02:19 PM #6 (permalink)
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Default Re: Back after 5 years... still worried

Sometime acid reflux causes swallowing issues. Glad you're seeing an ENT.
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