Hello everyone, I'm very new to all this so forgive me if I get any of the terminology wrong. I've been reading your posts for a little while and would really value and advice or support you may have... I'm finding things very hard at the moment....
My dad was diagnosed with multifocal motor neuropathy just under 7 years ago, beginning with weakness in his hand. He had extensive tests by Consultant Neurologists...there was no evidence of conduction block or GM antibodies but a slight prolongation of F waves (I have no idea what this means…..is it suggestive of ALS?). His EMG showed chronic nerve degeneration, plantar reflex was normal.
Anyway, he was commenced on IVIG around 18 months after his initial symptoms and his treatment has been very sporadic due to organizational changes in the hospital dept. A few years ago, his neuro believes he has had some response to IVIG and that it is arresting any further decline BUT more recently (over the past year or so) his breathing has been affected (shortness of breath, inability to lie flat) as well as some weakness in his legs. Dad has seen a respiratory dr who diagnosed dad with sleep apnoea and Type 2 respiratory failure… he gets breathless during activities (walking) and describes a pressing down feeling on his diaphragm.
In our last appt with the neuro he surprised us by saying that Dad most probably had motor neurone disease/ALS. The neuro was pretty flippant about delivering the diagnosis…we had previously been told it was not ALS.
This came as a massive shock and I, more that anyone have struggled to cope with the news. I actually wrote a letter to the neuro to seek further clarification but have heard nothing yet. So far, his symptoms are weakness and atrophy in his right arm, some weakness (no atrophy) in his legs and shortness of breath and fasticulations. No issues with swallowing After seeing our reaction during the consultation with him, the neuro suggested we try a more regular course of IVIG and then review in 6 months to see how things progress.
We were left feeling completely shattered and unprepared and very much in limbo. He didn’t really give us any further info and only recently has organised a meeting with a physio and OT. From looking through other people's experiences, it seems like motor neurone disease is often given as a differential diagnosis. Dad's recently had a course of IVIG and feels stronger and his breathing is a little better. He has however, (since the motor neurone probable diagnosis had two falls). Does IVIG usually improve ALS symptoms? Or could this be a subjective improvement? How quickly does MMN progress? Can it progress with IVIG?
We're still very much in limbo about all of this and dont know what to think. How closely can MMN mimic motor neurone? Has anyone else had these experiences? Its so difficult to accept ALS when multifocal motor neuropathy has been the primary diagnosis. I just feel scared....maybe at what to expect....i’m praying (regardless of what Dad has, that he’ll be around to see me get married and have kids).
Thank you so much for listening...any thoughts or advice would be welcomed....any thoughts on how i can keep strong for myself and my family would be welcomed xx
My dad was diagnosed with multifocal motor neuropathy just under 7 years ago, beginning with weakness in his hand. He had extensive tests by Consultant Neurologists...there was no evidence of conduction block or GM antibodies but a slight prolongation of F waves (I have no idea what this means…..is it suggestive of ALS?). His EMG showed chronic nerve degeneration, plantar reflex was normal.
Anyway, he was commenced on IVIG around 18 months after his initial symptoms and his treatment has been very sporadic due to organizational changes in the hospital dept. A few years ago, his neuro believes he has had some response to IVIG and that it is arresting any further decline BUT more recently (over the past year or so) his breathing has been affected (shortness of breath, inability to lie flat) as well as some weakness in his legs. Dad has seen a respiratory dr who diagnosed dad with sleep apnoea and Type 2 respiratory failure… he gets breathless during activities (walking) and describes a pressing down feeling on his diaphragm.
In our last appt with the neuro he surprised us by saying that Dad most probably had motor neurone disease/ALS. The neuro was pretty flippant about delivering the diagnosis…we had previously been told it was not ALS.
This came as a massive shock and I, more that anyone have struggled to cope with the news. I actually wrote a letter to the neuro to seek further clarification but have heard nothing yet. So far, his symptoms are weakness and atrophy in his right arm, some weakness (no atrophy) in his legs and shortness of breath and fasticulations. No issues with swallowing After seeing our reaction during the consultation with him, the neuro suggested we try a more regular course of IVIG and then review in 6 months to see how things progress.
We were left feeling completely shattered and unprepared and very much in limbo. He didn’t really give us any further info and only recently has organised a meeting with a physio and OT. From looking through other people's experiences, it seems like motor neurone disease is often given as a differential diagnosis. Dad's recently had a course of IVIG and feels stronger and his breathing is a little better. He has however, (since the motor neurone probable diagnosis had two falls). Does IVIG usually improve ALS symptoms? Or could this be a subjective improvement? How quickly does MMN progress? Can it progress with IVIG?
We're still very much in limbo about all of this and dont know what to think. How closely can MMN mimic motor neurone? Has anyone else had these experiences? Its so difficult to accept ALS when multifocal motor neuropathy has been the primary diagnosis. I just feel scared....maybe at what to expect....i’m praying (regardless of what Dad has, that he’ll be around to see me get married and have kids).
Thank you so much for listening...any thoughts or advice would be welcomed....any thoughts on how i can keep strong for myself and my family would be welcomed xx