The Saga Continues

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Michael949

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Joined
Oct 6, 2019
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16
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Learn about ALS
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00/0000
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Hello to all. Most of you probably don't remember me but I went through a situation about 11 months ago, that I posted about on here. Long story short, I was told I most likely did not have ALS by a neurologist and declined seeing a neuromuscular specialist. I was told this was all related to my cervical stenosis and carpal tunnel.

Fast forward to this July...My left foot/ankle simply started to decline in function. That is the only way I can describe it. It's stiff. Walking on it just feels "off." The entire leg now looks smaller than the right. The body wide fasciculations that I used to have are now limited to this leg.

I have private insurance now and called my neurosurgeon to tell him my symptoms and that I think it is a result of the stenosis getting worse. His PA calls me back and tells me that what the Dr. sees on my MRI should not be causing leg or foot weakness. At least not at this point. She tells me I should go back to a neurologist. I tell her that I have already seen one and that anything serious was ruled out. I asked her without hesitation, "If I had ALS, wouldn't it have progressed much quicker, since it's been a year from the time symptoms first appeared?" She replied "That's what I'm concerned about, Mike. You haven't seen a neurologist for almost a year and things seem to be getting worse." This statement was heartbreaking.

I am seeing another neurosurgeon at a very good facility called Scripps in La Jolla, CA to get his opinion. If he thinks the same, I will go see a neurologist who specializes in neuromuscular disorders.

I don't want to bombard the board with a ton of questions, because last time I think I upset a few people, but I do have a few. How typical is this? Going almost a year with doctors telling you that it's not ALS and the reversing course when symptoms get worse and saying "That's what I'm concerned with." I'm not saying I have ALS but from what the neurosurgeon said, along with the weakness getting worse out of nowhere, I have to admit, I am thinking it is a possibility.

When ALS starts in a leg, does it usually progress to the other leg or another extremity on the same side, like the arm or hand?

Any input would be appreciated. Thanks.
 

Nikki J

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Joined
Mar 22, 2012
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9,395
Reason
PALS
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04/2014
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MA
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Either.

a statement was made over the phone. and it was just concern. Frankly you wore out your welcome and we said not to post unless you were diagnosed. You are not diagnosed at this time.

let us know if you do see a neuromuscular if you get diagnosed with ALS
 
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