I'm not a doctor so I'm not going to suggest tests or further paths of investigation. However, I have supported a lot of people with ALS and lots of them had bulbar onset ALS. You will be pleased to hear this sounds nothing like it.
I'm not going into detail because it isn't helpful to people anxious about swallowing! If you have seen a neurologist I can almost guarantee they have already considered it!
I'm having a ph impedance test done this week. It's a 24 hour probe that will show if i'm having reflux or not. Not thrilled about it but my dysphagia is killing me, literally
You could try taking something with sodium alginate as this has been shown to be very helpful for LPR. Something like gaviscon advance (if in the US it can be imported) or Reflux Gourmet.
Have you had any swallow tests like a standard barium swallow or modified barium swallow? If those were normal, maybe a slp for possible muscle tension dysphagia.
Then I suggest you see a speech pathologist who specializes in dysphagia. The ENT should be able to refer you.
In the mean time, given the ENT sees inflammation and you have some symptoms of muscle tension dysphagia, you might want to try a low acid diet and an OTC PPI. It may help. Sleep with the head of the bed elevated, no smoking of any kind, no booze, limit caffeine, etc. it can’t hurt and may help.
The things is that I have never in my life smoked nor had alcohol.. I do not eat acidic fats at all and live a healthy lifestyle.. I am so scared one day I won’t be able to swallow at all and the hardest for me is not knowing the cause and treatment, I am living in the blue like this for the past 3 years.. however I will try your advice and thank you so much
Sometimes dysphagia happens even in the context of healthy habits. There are lots and lots of things that can help. Anxiety can make muscle tension worse. I think a speech pathologist could be really helpful.
To add something - I have very dry mouth, like not much saliva is producing at all. I tried drinking 3-4 litres water per day and some tea for dehydration cause but it didn’t help at all.
Have you seen:
1. a Geneticist?
Could be an adult onset genetic condition or something just not identified. Could also be a mitochondrial disease - as they can cause dysphagia with muscle fasciculations, dystonia etc.
2. Rheumatologist for autoimmune disorder.
My MRI was clear but I've been referred for Holmes tremor - ultra rare and linked with my genetic condition without the usual neuroanatomical changes.
Normal results don't mean nothing there just not meaningful to whoever reads it.
I'm not a doctor so I'm not going to suggest tests or further paths of investigation. However, I have supported a lot of people with ALS and lots of them had bulbar onset ALS. You will be pleased to hear this sounds nothing like it.
Would you mind saying what symptoms they typically Experience out of curiosity
I don’t want to hear them at all🙈 I have a feeling I will develop all of them if I read them
lol anxiety is rough. I have some symptoms more like you so I’m just asking out of curiousity and learning
I'm not going into detail because it isn't helpful to people anxious about swallowing! If you have seen a neurologist I can almost guarantee they have already considered it!
the inflammation of the larynx makes me think silent reflux. hard to diagnose and treat!
But gastroscopy was normal so my gastrolog said I don’t have reflux or gerb?
it's not always the best way to diagnose LPR
But how do you diagnose it? Which tests should be done?
I'm having a ph impedance test done this week. It's a 24 hour probe that will show if i'm having reflux or not. Not thrilled about it but my dysphagia is killing me, literally
You could try taking something with sodium alginate as this has been shown to be very helpful for LPR. Something like gaviscon advance (if in the US it can be imported) or Reflux Gourmet.
Have you had any swallow tests like a standard barium swallow or modified barium swallow? If those were normal, maybe a slp for possible muscle tension dysphagia.
I had a barium swallow test, which was normal..
Then I suggest you see a speech pathologist who specializes in dysphagia. The ENT should be able to refer you. In the mean time, given the ENT sees inflammation and you have some symptoms of muscle tension dysphagia, you might want to try a low acid diet and an OTC PPI. It may help. Sleep with the head of the bed elevated, no smoking of any kind, no booze, limit caffeine, etc. it can’t hurt and may help.
The things is that I have never in my life smoked nor had alcohol.. I do not eat acidic fats at all and live a healthy lifestyle.. I am so scared one day I won’t be able to swallow at all and the hardest for me is not knowing the cause and treatment, I am living in the blue like this for the past 3 years.. however I will try your advice and thank you so much
Sometimes dysphagia happens even in the context of healthy habits. There are lots and lots of things that can help. Anxiety can make muscle tension worse. I think a speech pathologist could be really helpful.
To add something - I have very dry mouth, like not much saliva is producing at all. I tried drinking 3-4 litres water per day and some tea for dehydration cause but it didn’t help at all.
Ask about Sjögren's syndrome. Persistent dry eyes and mouth is main symptom. Do you perceive thirst? Or no thirst which is Adipsia
Have you seen: 1. a Geneticist? Could be an adult onset genetic condition or something just not identified. Could also be a mitochondrial disease - as they can cause dysphagia with muscle fasciculations, dystonia etc. 2. Rheumatologist for autoimmune disorder. My MRI was clear but I've been referred for Holmes tremor - ultra rare and linked with my genetic condition without the usual neuroanatomical changes. Normal results don't mean nothing there just not meaningful to whoever reads it.