spbalazs
Member
- Joined
- Nov 17, 2020
- Messages
- 19
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
- State
- LN
- City
- London
Hello everyone,
I have posted couple of times here and my old thread is not open for replies.
I have been having:
At the same time:
He did say that to be 100% sure, we would need to do a muscle biopsy but he did not recommend it as it is “not pleasant.”
I do wonder if I should’ve just gone for it?
He was also surprised that considering my issues, during the EMG test, they did not perform surface EMGs on my breathing muscles.
I wonder if it is worth for me to push for this? After 5 EMGs it does seem a bit silly, I feel.
Interestingly, I have been going for HIFEM (electro-magnetic field that interacts with motor neurons) treatments to strengthen my core muscles.
I tried it 6 months ago and it helped with my core muscle issues greatly and giving it another go now.
I have posted couple of times here and my old thread is not open for replies.
I have been having:
- Body-wide fasciculations
- Difficulty breathing especially when leaning forward or when swimming
- Issues with speech where I put words in the wrong order, use the wrong words or names, and difficulty thinking.
- Very evident exercise intolerance on core muscles, went from 100 sit ups to 25 in a space of 1 year. This is with constant workout and being tracked by my PT.
- I was drowning in a pool on a holiday. I am normally an excellent swimmer
- When I take a deep inhale, my diaphragm shakes. This was noted by my professor also.
At the same time:
- 5 normal EMGs
- Respiratory muscle function test normal
- Full brain and spine mri normal
- Reflexes brisk but not pathological
- MG ruled out, Isaac syndrome ruled out both based on blood test and EMGs
- The only abnormalities are high CK and high AST and ALT. (Liver scan normal)
He did say that to be 100% sure, we would need to do a muscle biopsy but he did not recommend it as it is “not pleasant.”
I do wonder if I should’ve just gone for it?
He was also surprised that considering my issues, during the EMG test, they did not perform surface EMGs on my breathing muscles.
I wonder if it is worth for me to push for this? After 5 EMGs it does seem a bit silly, I feel.
Interestingly, I have been going for HIFEM (electro-magnetic field that interacts with motor neurons) treatments to strengthen my core muscles.
I tried it 6 months ago and it helped with my core muscle issues greatly and giving it another go now.