Hi everyone - I just tried posting on the PMA forum but havent had any responses as yet so thought i'd re-post here...
I'm just wanting some advice and support and hoping for some help...
My father has recently been diagnosed with MND after 7 years of asymmetric muscle weakness and atrophy just in his right hand and arm. He was originally diagnosed (7years ago) with multfocal motor neuropathy but as the IVIG treatment hasnt stopped the progression of the weakness, his diagnosis was changed this year. Its come as a huge shock....
3-4 years ago Dad also developed some shortness of breath which was originally thought to be unrelated to the weakness elsewhere. Since the change of diagnosis, Dad has developed some further weakness with his breathing...his muscle power and strength is good (normal) in his left arm and both legs are strong and normal
He continues to have no upper motor signs just lower motor signs. He has developed some back weakness in the past 3 months which have made it really hard for him to walk up stairs...he is still ambulant but chooses to use a wheelchair as he fears falling (he has had two falls this year when his back gave way). He has started using Bipap in the last week as he has an increase in his CO2 in his blood, Oxygen sats are normal.
I really need some help in understanding why there has been a change in diagnosis after 7-8 years since the onset of symptoms I need help understanding why the new diagnosis has been made. Of interest, i have just read some of Dad's tests and the neurologist said that there was a suspicion of mildly prolonged F waves....i understand this might be more indicative of a neuropathy than motor neurone disease. He also had chronic denervation with little reinnervation....what does this indicate? Does this happen in MND?
I have tried talking to people about all of my doubts (the neurologist) but everyone has been really dismissive. I just wanted to know whether other people have had similar progression and whether it is right for me to be doubtful of the change in diagnosis. Our contact with health professionals has been patchy and sporadic and i just feel like they dont know my Dad.
Any advice would be so helpful
Thank you
Lola
I'm just wanting some advice and support and hoping for some help...
My father has recently been diagnosed with MND after 7 years of asymmetric muscle weakness and atrophy just in his right hand and arm. He was originally diagnosed (7years ago) with multfocal motor neuropathy but as the IVIG treatment hasnt stopped the progression of the weakness, his diagnosis was changed this year. Its come as a huge shock....
3-4 years ago Dad also developed some shortness of breath which was originally thought to be unrelated to the weakness elsewhere. Since the change of diagnosis, Dad has developed some further weakness with his breathing...his muscle power and strength is good (normal) in his left arm and both legs are strong and normal
He continues to have no upper motor signs just lower motor signs. He has developed some back weakness in the past 3 months which have made it really hard for him to walk up stairs...he is still ambulant but chooses to use a wheelchair as he fears falling (he has had two falls this year when his back gave way). He has started using Bipap in the last week as he has an increase in his CO2 in his blood, Oxygen sats are normal.
I really need some help in understanding why there has been a change in diagnosis after 7-8 years since the onset of symptoms I need help understanding why the new diagnosis has been made. Of interest, i have just read some of Dad's tests and the neurologist said that there was a suspicion of mildly prolonged F waves....i understand this might be more indicative of a neuropathy than motor neurone disease. He also had chronic denervation with little reinnervation....what does this indicate? Does this happen in MND?
I have tried talking to people about all of my doubts (the neurologist) but everyone has been really dismissive. I just wanted to know whether other people have had similar progression and whether it is right for me to be doubtful of the change in diagnosis. Our contact with health professionals has been patchy and sporadic and i just feel like they dont know my Dad.
Any advice would be so helpful
Thank you
Lola
