Doctor worried about Bulbar onset

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Cricha

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Hi there. I have been suffering with swallowing difficulty for the past 3-4 months. It started with feeling as though I momentarily forgot how to swallow but has since progressed in to the feeling of too much saliva in my mouth and my muscles in the throat not feeling like they can keep up with the urge to swallow. My speech is generally ok but I feel as the day goes on, the muscles in my throat feel strained and my voice has to try hard to be louder. The swallowing difficulties ease off but seem to be worse on an evening. I also struggle with initiating a swallow occasionally. I’ve been to see the doctor and have been sent for a barium swallow. What worried me is that he mentioned bulbar onset ALS which I don’t think was an official diagnosis but seemed to be the thing he was most worried about. I dont struggle with food or drink, mainly saliva and i have a lot of mucus in the back of my throat but no blocked nose etc. Obviously I am extremely worried. I am a 25 year old female and want to know what support there is out there for someone who hasn’t yet received a diagnosis. I also have noticed my tongue involuntarily “dancing” when sticking it out but it moves around fine. Many thanks for your time.
 

Nikki J

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Hi
your thread was moved as it sounds like you are not diagnosed as you said.

was the doctor a gp? You said you were set up for a barium swallow. Were you also referred to a specialist of any kind?

a diagnosis of ALS should only be made by a neuromuscular neurologist

of course hearing that is worrisome but from what you have said the odds are very much in your favor. ALS is extremely rare in someone of your age without family history. Bulbar onset even more so. Although bulbar is about 1/3 of ALS it is more commonly seen in older cases.

it is normal for a tongue to move when sticking out

swallow issues can have many many causes. It sounds like your doctor was saying worst case not most likely.

you will know more after your swallow study. Please try to relax and keep busy while you wait for results

good luck
 

Cricha

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Hi. Thanks so much for your response. I appreciate it. Yes it was a GP who saw me and said he was worried about Bulbar palsy. Thank you. I have the swallow test next Monday. I have read some of the other threads and was wondering if my symptoms sound typical of BP? The swallowing difficulties as mentioned haven’t necessarily got worse but have stayed stable for around 3 months. They do come and go though however It’s the “forgetting how to swallow” part that worries me. It only happens momentarily but is enough for me to realise there is a problem! Thanks again
 

Cricha

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Hi. I have had the results of my barium
Swallow back and all seems to be normal. Since my last post I have seen an improvement in my swallowing and only noticed the “forgetting to swallow” feeling a couple of times very momentarily. I was wondering if you could advise on whether or not you think it’s worth going through all the stress of tests for bulbar onset given I’ve seen an improvement? I’ve read on other forums that symptoms would be consistent if it was this? I don’t want to waste valuable resources and have to put myself through months of worry if I don’t have to! Thanks in advance!
 

Nikki J

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So your swallow is improved and your barium swallow was normal. It doesn’t sound like there is anything to investigate. I would normally say ask your doctor but they raised the ALS issue very prematurely. Still with any health issues you need to follow medical advice. You are right ALS is from dying/ dead motor neurons That don’t get better
 

Cricha

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Thank you! I’ll speak with the doc :) appreciate your kindness x
 
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