Wongly diagnosed?

[Anna_SBD]

Hello to All.
I think my dad has been wrongly diagnosed.
My dad was diagnosed with ALS respiratory onset in April 2022, because of a bilateral diaphragmatic paralysis. He could eat, drink, speak, walk, write. He had some fasciculations in the arms. After 18 months, he can still speak, drink, walk but its very difficult now due to the loss of strength, he suffers extreme fatigue. He has more fasciculations. Basically, he has the lower motor neurone affected, but not the upper one. He will die of respiratory failure but wii still be able to speak correctly, to move his arms and legs, to drink. Do ALS patients die being able to do all these things??
He underwent a treatment based on inmoglobulines intravein (IVIG) during two months and his respiratory function improved! But his doctor stopped the treatment cause IVIG is not the treatment for ALS. We were devastated. Does anybody knows a doctor that can help?
Sending you all the strength, courage and love in your fight with ALS.

 

[Nikki J]

I am sorry. This must be very hard. Respiratory onset is quite rare and occasionally people die without much else affected. You say your dad does have leg weakness though.

You might look on the encals site for Spanish ALS specialists if he wants another opinion. The improvement with ivig is interesting

To die of respiratory failure before full paralysis if this is ALS is sad but perhaps not the worst. Many die fully paralyzed and totally dependent on others

If you want to share emg and pulmonary results someone might want to comment