Hi All,
I posted some time ago about my swallowing issues.
I have been liquids for 2 years. Recently I had to go to thin liquids, and the past few days I am aspirating.
I've had 5 EMG's & NCS's, CT scan of head, oesophageal manometry, Nerve hyperexcitability test.
The diagnosis has so far (all over the last 12 months) been:
Voltage Gated Potassium Anti-bodies positive
Possible Elhers Danlos Syndrome
Cramp fasiculation syndrome
Pharyngeal Dysphagia
A oesophageal manomtery revealed that my oesophagus had regular failed perystalsis, but that the upper and lower sphincter were relaxing ok. This led them to believe that my oesophageal issues at least were down to Elher Danlos, but that still leave the rather serious (now that I am aspirating the few fluids I live on) pharyngeal issues.
The Elhers Danlos specialist admits that although they may be some with upper throat issues, he has not come across any like me.
Equally, those with voltage gate potassium anti-bodies and CFS (or even Isaacs) have not come across anyone with swallowing problems as bad as me.
The neuro says my nerves are fine and that I don't need to be tested again for motor neurone disease as I should be a lot worse (this was before I started aspirating).
I've had a head scan about 12 months ago to rule out MS.
Yet it seems to my uneducated eye, that only ALS and MS folk have swallowing issues as severe (or more so) than mine.
I asked the neuro if you can test the nerves from the throat to the brain, and he said "yes but I don't need to because your voice is ok".
My questions are:
Could they have missed something?
Any ideas on where to go from here?
Anything that may help me?
I'm in a real mess now that I can't even drink, so any suggestions most gratefully received.
I posted some time ago about my swallowing issues.
I have been liquids for 2 years. Recently I had to go to thin liquids, and the past few days I am aspirating.
I've had 5 EMG's & NCS's, CT scan of head, oesophageal manometry, Nerve hyperexcitability test.
The diagnosis has so far (all over the last 12 months) been:
Voltage Gated Potassium Anti-bodies positive
Possible Elhers Danlos Syndrome
Cramp fasiculation syndrome
Pharyngeal Dysphagia
A oesophageal manomtery revealed that my oesophagus had regular failed perystalsis, but that the upper and lower sphincter were relaxing ok. This led them to believe that my oesophageal issues at least were down to Elher Danlos, but that still leave the rather serious (now that I am aspirating the few fluids I live on) pharyngeal issues.
The Elhers Danlos specialist admits that although they may be some with upper throat issues, he has not come across any like me.
Equally, those with voltage gate potassium anti-bodies and CFS (or even Isaacs) have not come across anyone with swallowing problems as bad as me.
The neuro says my nerves are fine and that I don't need to be tested again for motor neurone disease as I should be a lot worse (this was before I started aspirating).
I've had a head scan about 12 months ago to rule out MS.
Yet it seems to my uneducated eye, that only ALS and MS folk have swallowing issues as severe (or more so) than mine.
I asked the neuro if you can test the nerves from the throat to the brain, and he said "yes but I don't need to because your voice is ok".
My questions are:
Could they have missed something?
Any ideas on where to go from here?
Anything that may help me?
I'm in a real mess now that I can't even drink, so any suggestions most gratefully received.