Not sure if symptoms are bulbar motor neuron disease? Seeking advice..

[Cat]

Hi i wonder if anyone can advise. I was diagnosed with vocal cord dysfunction one year ago and had an operation for bad supraglottic collapse one year ago. I have struggled with a weakening breath, cough and more painful swallow ever since the op, which has made no difference at all. I have increasing struggled with moving my diaphragm and chest, and now movement of both is very limited.. I feel my torso is in a tightening grip. My alone pressure is really high now and worse after walking.. My diaphragm barely moves standing up. I have more and more difficulty swallowing and the pressure in my throat is constant and choking feeling. I used to have laryngospasms which have now gone and now heaviness in throat and torso to breathe. I have been having really bad choking fits.I struggle to lie down as breathing getting shallower Acid reflux has ruled out. I had an emg of four limbs but not throat or breathing muscles, which i feel are worsening. My last peak flow reading spirometry was 59%. Neurologist dismissed me and my gp has been completely dismissive?

[Terry]

Hi Cat and welcome to the forum;

I was hoping that someone with bulbar Mnd would reply first as although I have some of their symptoms, I have a different type.

Your GP might well have ruled out Mnd especially as the neuro has but he can't be dismissive of your very serious problems.

Normal tests for Mnd are, bloods, MIR of brain, lumber puncture and the EMG.

You could go private and see a different Neruo or it might even be possible to get a second opinion but your Neruo must have had a good reason for saying that.

Hope you get to the root of the problem very soon.

Best wishes, Terry

[Lynne K]

Hi Cat. Sorry that you haven't got any diagnosis yet despite very worrying symptoms. Terry has explained MND tests but I didn't have the spinal test. Good luck with finding a cause and getting appropriate treatment. Take care, Lynne

[Guest]

Look for fasiculations, skin fluttering usually on your arms or legs. That is a fairly good indicator of MND