ALS?

jaxenro

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Joined
Jun 22, 2022
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2
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Learn about ALS
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00/0000
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US
State
GA
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Gainesville
My wife was diagnosed with Parkinson's over a year ago but the disease is progressing much faster than expected and the symptoms are not all directly Parkisons related although some are. She is on carbadopa-levadopa (15 25-100 daily) which we would expect to treat the PD symptoms and it does seem to be, to a degree, the tremors are mostly under control when sh tales the meds although they come back in the off times. However there are points that led me to suspect ALS was "hiding" under the PD diagnoses and the neurologist has scheduled a EMG to validate. Female age 57

all symptoms seem to be worse when she has been active or is tired and she tires very easily

what concerns me is the progression time:

90 days ago she used a cane to help walk when out but was mostly ok within the house, now she needs a cane to walk from room to room, when able to, and a wheelchair when out. Many times walking from the bedroom to the kitchen using the cane she is unable to return without help a distance of 30 feet

90 days ago her legs would get "twitchy" and not hold her up, she could not stand or walk, maybe once/twice a week now it is 5 or 6 out of seven days. This used to be a late in the day event now it can start as soon as she wakes up

swallowing ability worsens each week. We attributed it to PD but since the levadopa seems to be addressing the PD symptoms there must be some other cause. She had an endoscopy but nothing out of the ordinary

slurred speech she sounds drunk but it doesn't seem to a be cognitive disability so much as she just can't form the words, used to be occasionally but the occasions are growing in frequency

heavily swollen feet and ankles progressing up to her knees

muscle cramps

fatigue

I keep notes every symptom has worsened over the past 90 days despite the improvement in PD due to medication

also meant to add falling this was a very occasional even now it is weekly
 

Nikki J

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Joined
Mar 22, 2012
Messages
14,116
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Good luck and let us know. You did not ask a question other than the title which of course only the emg and the doctors can answer. if you are not at a major medical center and a specialized clinic you probably should be. Were Parkinson’s plus conditions discussed?
 

jaxenro

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Joined
Jun 22, 2022
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Learn about ALS
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00/0000
Country
US
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GA
City
Gainesville
not yet probably waiting on the EMG to see what they think but it isn't for three weeks i was i think looking for some confirmation that i might be heading in the right track - at least in having them rule it out

i'd like to believe the Dr's know what they are doing but they missed the PD probably because she was having seizures and they were focused on that - rather strange seizures where she would just laugh hysterically for ten minutes at a time along with regular ones - but the trileptal seems to have them calmed down - they started ten years ago got stronger for a few years then stopped with the trileptal

the other issue she is having is breathing it gets harder each week. she does have a pulmo specialist and last she checked the lungs were actually improving but it seems like her chest muscles don't work as well
 

KimT

Extremely helpful member
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Joined
Nov 18, 2014
Messages
4,343
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
I agree with Nikki. A major medical center is where she should be seen.
I wish you all the best.
 
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