Alice joined me in my consultation with Professor Leigh at Kings College Hospital. I must say the Professor was very charming and gave us two hours of his valuable time.
He agreed with the diagnosis of MND and said, encouragingly, that there was no definite upper motor neurone signsâ€¦ which is the case in 10 -20% of patients presenting with MND. He wondered whether I would develop â€œflail armâ€ syndrome, which often spares the cranial nerves and the legs, for many months, or even years.
I suppose I was meant to take these comments as encouraging. In other words, although I might lose the use of my hands and arms I could live for some considerable time in this helpless state!!
Whilst generally confirming the neurologist’s diagnosis, Professor Leigh concluded that he saw this as a lower form of MND , not strictly speaking falling within the rubric of amyotropic lateral sclerosis (ALS)â€¦. Lower MN do tend to be associated with the better prognosis, and of course, he has no evidence of respiratory muscle involvement, also indicative of a better prognosis.
He referred me to an MND support unit at Addenbrookes Hospital, in Cambridge.