Hello... desperate here.
My mother became ill with what was eventually diagnosed as CFS around 7.5 years ago at age 69. Fatigue, flu like feeling, sleep problems, unrefreshing rest etc main issues.
Condition remained stable overall for 7 years (with some weeks or months being worse, and feeling worse after too much activity). All seems to fit with CFS.
Last year, coinciding with a very traumatic period (my father being taken very poorly, 6 weeks in a hospital that was an hour's round trip travel to visit, diagnosed terminally ill late June) my mother's health took a turn for the worse. Very stressed and upset of course, plus voice gradually starting to get hoarse, overwhelming fatigue, muscle weakness particularly in legs. Numerous 'falls' (more crumpling to the ground really - she knew her legs were giving way). Mobility became more restricted by the week and independence lost.
Due to her care needs (unable to get herself out of bed to get to commode by herself etc) she entered a care home for respite. Unfortunately her condition continued to deteriorate, particularly her voice which has now completely gone and she didn't move from bed.
New GP who attends care home was concerned and ordered a neurological MRI to check for anything else.
Before that came around she was rushed to hospital last weekend with breathing issues which have been identified as a small amount of fluid on her left lung - query malignancy or aspiration - at the moment thought more likely the latter. Would make sense as
Doctor concerned about her overall condition and has involved neurologist who thinks she has a degenerative neurological disorder i.e. ALS/MND due to a) complete loss of voice b) swallowing issues, tongue weakness (today she was assessed as not safe to eat/drink by mouth and tube feeding commenced) c) overall weakness (with all these having rapidly deteriorated) and also d) fasciculation in arm and e) strong reflexes.
Neurological MRI has been done now and appears normal - though MND would not be identified through it. EMG and nerve conduction tests booked for early next week.
Mother is now 76 years of age.
I am desperate, clearly I don't want it to be MND or similar with the awful prognosis.
I may well be clutching at straws but I have read that a) to d) above can be severe CFS symptoms. Doctors also say such a rapid deterioration is not CFS. As I said, the deterioration occurred during very high stress levels, my mother was badly affected by my dad's terminal diagnosis.
Advice please... am I trying to unrealistically find hope? Or is there anything in my lay-person's research?
The idea of losing both my parents at the same time is beyond impossible to comprehend.
My mother became ill with what was eventually diagnosed as CFS around 7.5 years ago at age 69. Fatigue, flu like feeling, sleep problems, unrefreshing rest etc main issues.
Condition remained stable overall for 7 years (with some weeks or months being worse, and feeling worse after too much activity). All seems to fit with CFS.
Last year, coinciding with a very traumatic period (my father being taken very poorly, 6 weeks in a hospital that was an hour's round trip travel to visit, diagnosed terminally ill late June) my mother's health took a turn for the worse. Very stressed and upset of course, plus voice gradually starting to get hoarse, overwhelming fatigue, muscle weakness particularly in legs. Numerous 'falls' (more crumpling to the ground really - she knew her legs were giving way). Mobility became more restricted by the week and independence lost.
Due to her care needs (unable to get herself out of bed to get to commode by herself etc) she entered a care home for respite. Unfortunately her condition continued to deteriorate, particularly her voice which has now completely gone and she didn't move from bed.
New GP who attends care home was concerned and ordered a neurological MRI to check for anything else.
Before that came around she was rushed to hospital last weekend with breathing issues which have been identified as a small amount of fluid on her left lung - query malignancy or aspiration - at the moment thought more likely the latter. Would make sense as
Doctor concerned about her overall condition and has involved neurologist who thinks she has a degenerative neurological disorder i.e. ALS/MND due to a) complete loss of voice b) swallowing issues, tongue weakness (today she was assessed as not safe to eat/drink by mouth and tube feeding commenced) c) overall weakness (with all these having rapidly deteriorated) and also d) fasciculation in arm and e) strong reflexes.
Neurological MRI has been done now and appears normal - though MND would not be identified through it. EMG and nerve conduction tests booked for early next week.
Mother is now 76 years of age.
I am desperate, clearly I don't want it to be MND or similar with the awful prognosis.
I may well be clutching at straws but I have read that a) to d) above can be severe CFS symptoms. Doctors also say such a rapid deterioration is not CFS. As I said, the deterioration occurred during very high stress levels, my mother was badly affected by my dad's terminal diagnosis.
Advice please... am I trying to unrealistically find hope? Or is there anything in my lay-person's research?
The idea of losing both my parents at the same time is beyond impossible to comprehend.
