Samkl
Distinguished member
- Joined
- Nov 1, 2019
- Messages
- 143
- Reason
- Lost a loved one
- Diagnosis
- 08/2019
- Country
- AU
- State
- NS
- City
- Wollongong
Hello,
Thank you for spending your precious energies helping other people navigate this whirlwind. It's extraordinary generous, given the challenges you face.
I've been reading the forum for a few weeks now, so it's about time I introduced myself. My brother was diagnosed early August with "diffuse anterior horn cell disease". He was referred to MND clinic at a major hospital, just 10 minutes form his home. I've read enough posts here to realise he is at least lucky in this. Three weeks later, at the MND clinic, the Clinic head doctor said she was not convinced at this point that he had MND, as he did not meet the criteria. He is now doing a 3 month IVG trial, which from my reading here is a common experience prior to a firm diagnosis. I'd have to say that, even though I haven't much of clue about it all to me all the clinical ducks seem to line up for MND-ALS. For example, his EMG found no conduction block, so I'm presuming MMN is out of the equation.
I am expecting the diagnosis to be confirmed. However - a minor rant. When the initial diagnosis was made by the first neurologist, he sat down and said "Well it's MND - you've got 2 years". The doctor was sympathetic but given my brother doesn't meet the clinical criteria, I was shocked the doctor was so blunt. Where is the emotional intelligence?
Still, it is was it is, and the sooner we have that diagnosis, the sooner we can look at services for my brother. He recovered from Stage 4 throat cancer (5 years post cancer in 2016), and has 4 children at home so this has come as a terrible shock.
Thank you again for being here.
Thank you for spending your precious energies helping other people navigate this whirlwind. It's extraordinary generous, given the challenges you face.
I've been reading the forum for a few weeks now, so it's about time I introduced myself. My brother was diagnosed early August with "diffuse anterior horn cell disease". He was referred to MND clinic at a major hospital, just 10 minutes form his home. I've read enough posts here to realise he is at least lucky in this. Three weeks later, at the MND clinic, the Clinic head doctor said she was not convinced at this point that he had MND, as he did not meet the criteria. He is now doing a 3 month IVG trial, which from my reading here is a common experience prior to a firm diagnosis. I'd have to say that, even though I haven't much of clue about it all to me all the clinical ducks seem to line up for MND-ALS. For example, his EMG found no conduction block, so I'm presuming MMN is out of the equation.
I am expecting the diagnosis to be confirmed. However - a minor rant. When the initial diagnosis was made by the first neurologist, he sat down and said "Well it's MND - you've got 2 years". The doctor was sympathetic but given my brother doesn't meet the clinical criteria, I was shocked the doctor was so blunt. Where is the emotional intelligence?
Still, it is was it is, and the sooner we have that diagnosis, the sooner we can look at services for my brother. He recovered from Stage 4 throat cancer (5 years post cancer in 2016), and has 4 children at home so this has come as a terrible shock.
Thank you again for being here.