KevinM
Senior member
- Joined
- Mar 30, 2019
- Messages
- 559
- Reason
- PALS
- Diagnosis
- 06/2019
- Country
- US
- State
- FL
- City
- Tallahassee
Well, damn. My local neurologist, after two months of elimination tests, has now indicated likely NMD, with ALS being the most likely candidate.
He basically kicked the can down the road and referred me to Dr. Pulley at Jacksonville Shands. We see him in late April for a second EMG and opinion, but we harbor no illusion that his conclusion will be different.
I have no clinical weakness or other impairments at the moment, so the current diagnosis stops well short of a “definite” label without further evidence of progression. However, all the normal blood work, MRI, etc., along with 1) an abnormal EMG done in early March; 2) nonstop full body fasciculations that came on overnight in late January and started the whole ball rolling, and 3) muscle quivering/tightness/occasional spasms that have progressed, led to his opinion.
He’s more surprised than me. He sees about 3-4 cases a year, all of which have very obvious presentations by the time they come to him. I was very different, because I started the diagnosis process so early after my first symptom.
(Don’t swallow your collective tongues DIHALS’ers, but if you’re over 50 the sudden onset of full body twitches with unique characteristics can actually be a first symptom in some atypical cases).
A few personal details: my wonderful spouse of 27 years and I live in North Florida, as does our 25 year-old daughter. I just turned 62 and like so many here, have been a fit, active person my entire life. I am fortunate to have had a very fulfilling 30-year career in the nonprofit world of park and open space creation. So much for long term retirement planning...
Thank you for being here. I have learned a great deal over the past two months, and I have grown very fond of many of you through your posts. I’ll report back after the Shands visit.
Sorry for the long post. Brevity is not a strength. Kevin
He basically kicked the can down the road and referred me to Dr. Pulley at Jacksonville Shands. We see him in late April for a second EMG and opinion, but we harbor no illusion that his conclusion will be different.
I have no clinical weakness or other impairments at the moment, so the current diagnosis stops well short of a “definite” label without further evidence of progression. However, all the normal blood work, MRI, etc., along with 1) an abnormal EMG done in early March; 2) nonstop full body fasciculations that came on overnight in late January and started the whole ball rolling, and 3) muscle quivering/tightness/occasional spasms that have progressed, led to his opinion.
He’s more surprised than me. He sees about 3-4 cases a year, all of which have very obvious presentations by the time they come to him. I was very different, because I started the diagnosis process so early after my first symptom.
(Don’t swallow your collective tongues DIHALS’ers, but if you’re over 50 the sudden onset of full body twitches with unique characteristics can actually be a first symptom in some atypical cases).
A few personal details: my wonderful spouse of 27 years and I live in North Florida, as does our 25 year-old daughter. I just turned 62 and like so many here, have been a fit, active person my entire life. I am fortunate to have had a very fulfilling 30-year career in the nonprofit world of park and open space creation. So much for long term retirement planning...
Thank you for being here. I have learned a great deal over the past two months, and I have grown very fond of many of you through your posts. I’ll report back after the Shands visit.
Sorry for the long post. Brevity is not a strength. Kevin