gerg977
New member
- Joined
- Sep 29, 2022
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- CT
- City
- Canton
Hello-
I'm posting on behalf of my husband.
48y/o male- OIF Combat Veteran- all the usual exposures plus a side of occupational environmental hazmat exposure.
Bilateral babinski. Unilateral hoffmans, (L) non-dominant hand, brisk (R) patella reflex, MoCa score of 22.
Initial symptoms of a headache( dull right temporal-localized) weight loss of 30lbs in 3 weeks- formerly very muscular. Phantom smells (coffee). No Complaints of muscle weakness beyond what could be explained by overall atrophy.
Tests so far - CBC, Sed, ANA, Lymes, HIV,B12, Magnesium, heavy metal toxicity (theres an occupational element), RPR, plain head CT, 1 hr sleep deprived EEG. - all normal.
Tests upcoming - neuropsychologist exam due to the MoCa score
MRI w-w/o contrast (Monday actually)
24hr EEG.
I know the answer is work through the diagnosis - an EMG hasn't been mentioned yet. Will it yield results without actual weakness?
Reading the notes he is looking for seizures, migraines, lesions that weren't seen on CT, brain mass missed on plain CT, MS, and white matter disease processes/lesions.
He has NOT mentioned ALS but I keep circling back to it in research with an FTD component (there have been some interesting personality problems I won't get into here).
It's seems like a weird kaleidoscope of symptoms that don't fit a singular differential- including ALS - can someone point me in the right direction?
I'm a former paramedic so I know enough to keep my cool - but I also have (genetic testing confirmed) classic ehlers danlos syndrome and went several decades of my life misdiagnosed so I can be suspicious of the medical community.
If you hear hoofbeats look for horses - not zebras but I dont even know if we're hearing hoofbeats right now.
Also edited to add.. left leg twitches in sleep? I'm unsure where but it's more or less constant and seems to originate in his calf - this happened during the EEG, because he fell asleep, but didn't show on the EEG besides the video of it.
I have no idea if its important.
I'm posting on behalf of my husband.
48y/o male- OIF Combat Veteran- all the usual exposures plus a side of occupational environmental hazmat exposure.
Bilateral babinski. Unilateral hoffmans, (L) non-dominant hand, brisk (R) patella reflex, MoCa score of 22.
Initial symptoms of a headache( dull right temporal-localized) weight loss of 30lbs in 3 weeks- formerly very muscular. Phantom smells (coffee). No Complaints of muscle weakness beyond what could be explained by overall atrophy.
Tests so far - CBC, Sed, ANA, Lymes, HIV,B12, Magnesium, heavy metal toxicity (theres an occupational element), RPR, plain head CT, 1 hr sleep deprived EEG. - all normal.
Tests upcoming - neuropsychologist exam due to the MoCa score
MRI w-w/o contrast (Monday actually)
24hr EEG.
I know the answer is work through the diagnosis - an EMG hasn't been mentioned yet. Will it yield results without actual weakness?
Reading the notes he is looking for seizures, migraines, lesions that weren't seen on CT, brain mass missed on plain CT, MS, and white matter disease processes/lesions.
He has NOT mentioned ALS but I keep circling back to it in research with an FTD component (there have been some interesting personality problems I won't get into here).
It's seems like a weird kaleidoscope of symptoms that don't fit a singular differential- including ALS - can someone point me in the right direction?
I'm a former paramedic so I know enough to keep my cool - but I also have (genetic testing confirmed) classic ehlers danlos syndrome and went several decades of my life misdiagnosed so I can be suspicious of the medical community.
If you hear hoofbeats look for horses - not zebras but I dont even know if we're hearing hoofbeats right now.
Also edited to add.. left leg twitches in sleep? I'm unsure where but it's more or less constant and seems to originate in his calf - this happened during the EEG, because he fell asleep, but didn't show on the EEG besides the video of it.
I have no idea if its important.