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hunterross258

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Well folks, especially Nikki, Tillie, Dusty, Clearwater AL and skipper, who have been so gracious as to put up with my previous DIHALS posts, I may have finally zero'd in on a diagnosis.

First off, I want to thank you guys from the bottom of my heart for responding to me. Honestly, you guys played a big part in me going to seek therapy and medication for my anxiety issues. Once I got those under control, the mindset through this unknown neurological thing has gotten much better. Anyways....

I had an appointment this morning for Dr. Glass at Emory and boy was I terrified. My parents flew down for the appointment and it was a nerve-wracking experience.

In short, they couldn't detect any clinical weakness, yet noted hand and forearm atrophy. I had brisk reflexes for the first time, normally my knee one is absent to the point they have to have me pull my fingers...even my left arm seemed hyperreflexive, which seemed odd, but they said that it isn't a concern.

As of now, they have called it Parsonage Turner Syndrome. The incidence is 1.62/100,000. I've never heard of it before so for other DIHALS that believe twitching, atrophy and burning weakness is ALS, this is another instance where it likely is not. Tons of other things it can be.

Glass said he'd like to see me in four months to make sure it is not something sinister, but he did say "If ALS is the concern, I do not think it's that." He just wants to re-evaluate in a few months to make sure.

That's all for now, I may or may not follow up with ya'll in July when I go back, but again I know plenty of folks on here say it...THANK YOU....for your endless reality checks and forwardness. I will continue to support this disease through donation and we are actually having an ALS Awareness night at the stadium I work at in GA this season.

Take care,

Hunter
 

Nikki J

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I am very happy to hear this and wish you all the best. This is truly great news.
If you go back and read the sticky though you will see it is one of the things listed in the section what it was when it was not ALS. We had someone last year who turned out to have in fact.
Thanks for letting us know!
 

hunterross258

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Nikki - I guess the one thing I never really got is the pain/sensory issues. My major question I never really felt that got answered was that I don't feel this burning when I am at rest, but i get it when I lift things and such.

Even that pain is atypical in ALS from what I have been told. Usually the muscle in the arm just quits working and you lose strength with no pain and you just can't lift something.

Thanks again. I will perhaps be back after my follow up if anything changes. All the best.
 
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