Mother with possible ALS

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PedroB

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My 54 year-old mother started feeling Weakness in her right side about 1 year ago, which she immediately found strange since she's right-handed and had been an athlete her whole life. She then started to go to every doctor she possibly could: Rheumatologist, Orthopedist, Physiotherapist you name it.

After 1 year she still didn't have a clear diagnosis. Finally she decided last week to go see a Neurologist specialized in MND.
Clinical exams show weakness in her legs (Strength with resistance to passive force but can be overcome, 4th value in Medical Research Council scale) and atrophy (her right leg has now 1.5 cm less in circumference, something unusual since her light leg was usually her strongest/most built AND she went through a tough surgery on her left leg about 2 years ago).
She also presented bilateral Hoffman's sign reflex, which could be an UMN symptom, along with Snout reflex, which may or may not be another UMN sign (those are her only UMN signs though).

Her situation is quite strange though, because she shows no fasiculations, and her progression seems pretty slow (at least we think), along with only minor UMN deterioration signs (I read some doctors don't even consider bilateral Hoffman sign as a UMN indication, although I'm probably way too deep into wishful thinking). She also feels pain, mostly in her lumbosacral region, although this may not be significant since she does have sacroiliitis which could explain the pain.

She scheduled an EMG along with a Cervical MRI (only MRI she still hasn't gotten at this point) on the 20th. We're all extremely anxious here, but we're still hopeful that it's not ALS. The fact she has had a lot of exams and still no diagnosis is a real concern though. If anyone has any experience with dubious cases like this, I would love to hear it.
 

lgelb

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Sorry to hear about your mom. I'm not clear when you say "right side weakness," what she cannot do right now? UMN signs are not required for an ALS diagnosis in the real world, nor are fasciculations. But an MRC grade of 4 in her most severely affected muscles is certainly favorable, no matter what her ultimate diagnosis.

The EMG and MRI will say much more than we could, but I agree there is reason for hope as regards ALS.

Best,
Laurie
 

PedroB

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Thank you for the response Laurie.

There is nothing she cannot do, really. She's quite an active person so she immediately noticed the weakness though, as she used to be able to do exercises unilaterally better with her right side than her left, and all of a sudden that changed. I read it in the FAQ about diagnosis here that ALS is about "failing, not feeling", but since she has great body awareness, I fear she might be feeling it before she starts "failing" at daily activities.

The fact that worries me the most is that she still doesn't have a clear diagnosis. Only thing we know for sure is that she has sacroiliitis and bursitis, but that doesn't justify atrophy at all. Thoracic MRI, Lumbossacral MRI, Cervical CT, she has done it all and still no diagnosis.
 
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