Hi all, I had a confermed diagnosis of MND/ALS in early June - having been told in April following EMG test that it was likely. Mind you, I had been told in February that I definately did not have MND - so it came as double shock. I recently saw specialist at Royal Free Hospital who told me from the physical examination he could not confirm that I had MND, so he wants me to have a lumbar puncture (Deep Joy), just so he can tell me I have MND, which i know I have, as I have increasing muscle weakness in my legs and abdomen..
I am trying to adjust, have a great MND nurse, seen physio; today I saw a hydrotherapy physio and start that next week... I love the water so am looking forward to that. Still not seen OT which is so frustrating as I could do with a stair lift, bath board and wheelchair....
I am single, (was married for 35 years) retired, female with a wonderful group of friends and great church family who offer me great support. I can still drive and walk using crutches.
I look forward to chatting with some of you soon.
Oh, I started Riluzole for 5 weeks, but came of it, as it made me feel so sick and upset my tummy.
I am trying to adjust, have a great MND nurse, seen physio; today I saw a hydrotherapy physio and start that next week... I love the water so am looking forward to that. Still not seen OT which is so frustrating as I could do with a stair lift, bath board and wheelchair....
I am single, (was married for 35 years) retired, female with a wonderful group of friends and great church family who offer me great support. I can still drive and walk using crutches.
I look forward to chatting with some of you soon.
Oh, I started Riluzole for 5 weeks, but came of it, as it made me feel so sick and upset my tummy.
Comment