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SZcat

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Hello,

I posted a year ago when my father-in-law passed away from ALS in 2012. My thread was locked, so here is a new post.

This post concerns my S/O who has had a second round of EMG tests (first round was a year ago).

Family History of ALS with 2 family members: Father passed away from ALS in 2012, diagnosed in 2010. Brother of my S/O was diagnosed with ALS originally over 15 years ago, and the diagnosis stands, however a comment was made that it was unlikely ALS, but a MND currently in remission. This Brother has taken Rilitek for many years. Rilutek did not appear to have any effects on the Father.

A year ago we noticed my S/O had atrophy in his left leg. The EMG test showed degradation in the nerve (sorry if I have the terminology incorrect) but we were told to wait and see what happened in a year. Just before Xmas the second round of EMG tests were performed and we were shocked to learn there is significant degradation in the left leg since last yer (1.4 to 0.8). The right leg shows mild degradation, but this, thus far, is attributed to disc issues.

Heavy metal tests negative. Urine tests pending. Rilutek recommended but not finalized.

At this point, the neurologist is puzzled. There are no fasticulations, considerable wasting, and the beginning of foot drop symptoms in the left leg. I have noticed over the past year how difficult it is for my S/O to get up from chairs. He is a very tall man, so this isn't completely new.

From reading the forum, it seems ALS is usually one limb onset and yet his father and brother both had symptoms in both hands. Neither showed symptoms in the legs.

Its hard not to assume ALS, but we remain positive.

Any thoughts or advice? The hope is that the neurologist remains puzzled, and for some reason hasn't confirmed ALS. Is that standard?

Any help is appreciated.
 

Nikki J

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Hi
So sorry about your FIL

Unsure what degradation means for the EMG results. To diagnose ALS you need specific EMG findings plus some upper motor neuron findings on clinical exam. But when there is the FALS history I think there has to be a very high index of suspicion. Is there an identified family genetic defect that your SO has or can test for?
As for the discussion of Rilutek it is for ALS but I know someone who is gene positive with some symptoms but does not meet diagnosistic criteria who was offered Rilutek by neuro.

Biggest piece of advice if you are not seeing an ALS specialist you should do that. And even if you are if you are not satisfied with your current neuro look for a second opinion

Good luck
 

SZcat

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Thank you Nikki.

At this time I know there are specific lower motor neuron EMG findings (in the left leg), but we are waiting to discuss if there is some upper motor neuron findings on the next appointment.

I think I understand what you are saying, in that a ALS diagnosis requires both findings.

We've discussed testing for the genetic defect, but thus far the family seems against it. Perhaps if we collectively understood the benefit of the test, which the neuro doesn't have an opinion on.

What we do know is that something is definitely wrong with my SO, and it is a MND of some sort. We just don't know if its related to his father's ALS, and only hope it behaves more like his brother's condition that is in remission of some kind.

Thank you for the advice on seeking an ALS specialist. We are in Michigan and I believe U of M is the most likely candidate.
 
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