OT seeking some input? Please.

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hicksot

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Apr 10, 2023
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Learn about ALS
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Country
US
State
KY
City
Ashland
I am 49 year old female. I am an Occupational Therapist who works in a monthly ALS clinic at my hospital. May seem crazy me being here asking questions, however, my main focus during clinic is assisting with medical equipment needs, wheelchair evaluations etc., not really appropriate for me to ask individuals onset of symptoms etc.

I have read all the literature I can, I have read " before you ask", but I am still left confused.

My fasciculations began in March, mostly entirely down back of legs...didn't think anything about it, just thought it was my back, then my quads pulled in with kneecap fasiculations, still thought it was maybe an electrolyte imbalance. Bloodwork revealed all in normal range.

I finally spoke to the neurologist whom I work with (he's been practicing for approximately one year) he suggested EMG, he did find one fasciculation on left calf, said he did not see anything that concerned him. (Fasciculations quantity and frequency have tripled at least since that time) He also did quick generalized strength test, reflex etc. I know most everything I read has stated "clean" EMG=no ALS, however, EMG was completed maybe within 3 weeks of onset of fasiculations.....I can not accurately say if they occurred in my left leg first, then to my right or both at same time, but I can say they definitely "spread" to right arm/hand/shoulders last night and then to my left (not as often).

Again, left very confused....I have found where people have started with twitching as initial symptom then weakness onset, but maybe that is the exception versus the norm? It is definitely worse when muscle is relaxed at rest, when muscle is activated or engaged, not as bad. Is this anyone's experience? Since EMG done so early.....did anyone return at later date to have an additional one completed? Any recommendations on that thought process?
 
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Twitches first is the exception certainly and a significant number of those actually have some clinical weakness on exam. To have a normal exam and emg should be reassuring. Fear of ALS is common among health professionals and twitching is common in the general population

will you find someone who claims to have ALS after your presentation? Maybe. Is it at all common ? No. Generally the twitch first small subgroup are 1 sod1 carriers 2 males over 50. They also often have abnormal emgs

if you have concerns you need to see a doctor in person of course. Also it needs to be a formal visit. Curbside consults, as you know, are not really conducive to the best healthcare
 
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