amysgarden
Active member
- Joined
- Feb 20, 2015
- Messages
- 32
- Reason
- CALS
- Country
- US
- State
- WA
- City
- Oak Harbor
My husband is a big, tall burly guy. I have noticed over the last year that he seemed to have lost muscle mass and we chalked it up to age (early 50s). Instead of having tree trunk legs and arms, he has skinny guy legs/arms. Still no big deal.
He has had some cramping, tremors or fasciculations. I noticed him dropping things, tripping, general increased clumsiness over last 6-9 months. We went to the beach last fall and he could walk on the beach. We went a few weeks ago and he literally could not walk on the beach without my help (went went only 10 feet or so on hard packed sand before we had to turn around). Then I looked at him. He has a prominent foot/ankle/leg weakness on the left which was why he was falling to the left. His gait is extremely abnormal (using his whole body to walk).
He has no pain, no numbness or tingling. No slurred speech or trouble swallowing or headache or feeling of loss of balance or bladder/bowel problems. The problem has been persistent and progressive (does not get better or worse).
He is a man's man and will not complain (which is why he never said anything). He has adapted to this over the last year on our farm in ways I hadn't noticed until- until I noticed (using tractor all the time, not lifting anymore, projects undone, unable to lift and grip hale bales). He had to have his CPAP settings increased last year and he has complained about extreme difficulty turning in bed.
I am a nurse and dragged him to the doctor who was very concerned. He is unable to stand or walk on his heels (r/t strength), can only stand on tiptoe for seconds and only if holding onto something. The doctor sent him for CT scan (normal) and MRI of lumbar (no results yet). Then she states he will go for neuro consult. Doctor was quite concerned and refused to do any blood tests - she felt the other tests were more urgent.
The doctors I work with were not reassuring. I have a friend who takes care of ALS patients who said that everything I discussed sounded like potential ALS. I was under the assumption (since in my area of practice I have not cared for ALS patients and have little practical knowledge of it) that it would always move faster and present with bulbar symptoms. I have been told this is not necessarily true.
I am worried but not. I know either it is or it isn't and knowing this very minute will not change the outcome one bit. No early treatment or cure (as opposed to early cancer treatment) but I do know enough to be alarmed.
Anyway, thanks for listening. My doctor friends have suggested that an EMG is next and should give us some answers. It all takes time.
Amy
He has had some cramping, tremors or fasciculations. I noticed him dropping things, tripping, general increased clumsiness over last 6-9 months. We went to the beach last fall and he could walk on the beach. We went a few weeks ago and he literally could not walk on the beach without my help (went went only 10 feet or so on hard packed sand before we had to turn around). Then I looked at him. He has a prominent foot/ankle/leg weakness on the left which was why he was falling to the left. His gait is extremely abnormal (using his whole body to walk).
He has no pain, no numbness or tingling. No slurred speech or trouble swallowing or headache or feeling of loss of balance or bladder/bowel problems. The problem has been persistent and progressive (does not get better or worse).
He is a man's man and will not complain (which is why he never said anything). He has adapted to this over the last year on our farm in ways I hadn't noticed until- until I noticed (using tractor all the time, not lifting anymore, projects undone, unable to lift and grip hale bales). He had to have his CPAP settings increased last year and he has complained about extreme difficulty turning in bed.
I am a nurse and dragged him to the doctor who was very concerned. He is unable to stand or walk on his heels (r/t strength), can only stand on tiptoe for seconds and only if holding onto something. The doctor sent him for CT scan (normal) and MRI of lumbar (no results yet). Then she states he will go for neuro consult. Doctor was quite concerned and refused to do any blood tests - she felt the other tests were more urgent.
The doctors I work with were not reassuring. I have a friend who takes care of ALS patients who said that everything I discussed sounded like potential ALS. I was under the assumption (since in my area of practice I have not cared for ALS patients and have little practical knowledge of it) that it would always move faster and present with bulbar symptoms. I have been told this is not necessarily true.
I am worried but not. I know either it is or it isn't and knowing this very minute will not change the outcome one bit. No early treatment or cure (as opposed to early cancer treatment) but I do know enough to be alarmed.
Anyway, thanks for listening. My doctor friends have suggested that an EMG is next and should give us some answers. It all takes time.
Amy