markp99
New member
- Joined
- Jan 23, 2019
- Messages
- 3
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- NH
- City
- Nashua
2 prior EMGs (Nov & Dec) with neurologist #1 noted chronic denervation, resulting in a "Possible ALS" diagnosis. First EMG (Aug) did not show any issues. Dr #1 was clear that lack of muscle weakness/atrophy after 9 mos of continuous fasciculations and cramping was encouraging. Next EMG in 3 mos. Dr #1 did agree a 2nd opinion might be valuable to account for any bias on his part..
Yesterday we visited Mass General's ALS clinic for a new patient consult. Drs #2 & #3 at MGH were more positive to exclude ALS based on their diagnoses - agreeing with Dr #1's initial Aug diagnosis of BFS/CFS, especially in light of no muscle weakness.
I do not show a typical ALS progression of symptoms. They did caveat with the note that a very very small non-zero number of patients will contract ALS even after 9mo or longer with BFS/CFS. They suggested another visit in 6mo.
They are still curious to further explore the fasciculations and cramping and ordered another EMG to be conducted in their lab at MGH, as well as additional blood testing - paraneoplastic evaluation panel to assess for possible antibody issues.
They did also note a potential prescription of Mexiletine (heart med) to address continuous twitching and cramping; holding off on that for now.
Hoping to to formally strike the "Possible ALS" diagnosis from my medical records!
Yesterday we visited Mass General's ALS clinic for a new patient consult. Drs #2 & #3 at MGH were more positive to exclude ALS based on their diagnoses - agreeing with Dr #1's initial Aug diagnosis of BFS/CFS, especially in light of no muscle weakness.
I do not show a typical ALS progression of symptoms. They did caveat with the note that a very very small non-zero number of patients will contract ALS even after 9mo or longer with BFS/CFS. They suggested another visit in 6mo.
They are still curious to further explore the fasciculations and cramping and ordered another EMG to be conducted in their lab at MGH, as well as additional blood testing - paraneoplastic evaluation panel to assess for possible antibody issues.
They did also note a potential prescription of Mexiletine (heart med) to address continuous twitching and cramping; holding off on that for now.
Hoping to to formally strike the "Possible ALS" diagnosis from my medical records!