Update for previous post … got a different diagnosis

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Anxiouswife

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Learn about ALS
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Good morning,

I can’t add to my previous post, but I thought I’d add a separate update for anyone who’s googling furiously and had a similar experience.

Briefly…
My husband had sudden loss of dexterity in L hand in 2020 which progressed to some atrophy in the hand and forearm, then developed foot drop about a year later in L foot. Neurology and nerve conduction studies showed nothing. He had private vascular and spinal surgeon assessments, again nothing. Over the last year his symptoms have worsened. He had an abnormal leg EMG which sent us down the ALS / PLS warren…. Showed UMN issues. He then had a normal TMS. Basically we think the EMG was dud and not preformed accurately for various reasons.
He started having other strange issues recently. Pain, phantom smells, asymmetric skin wrinkling in water, stress intolerance, sleep issues… His mobility deteriorated. So we finally had an appointment with a neurologist that specialises in neurodegenerative conditions and he has now officially been diagnosed with young onset Parkinson’s! Not a diagnosis we ever considered.
Because he has no resting tremor. Only recently started developing an action tremor. He has very obvious cogwheel rigidity in his left arm which is a classic sign. The neurologist was upset for him that it has taken this long to get a diagnosis. Shows how muddy the neurology waters are…

I hope that’s helpful for anyone going through worrying symptoms

And a thank you to the moderators here who kindly answers the questions of individuals who are going through worrying times.

All the best!
 
Wow! I'm sorry for your husband's diagnosis, as well as for all the stress you both have had to go through. I'm glad that you finally got a diagnosis, though, so you'll no longer have to be searching for what has been going on. How stressful!
 
I am so glad you finally have an answer and direction. Thank you for letting us know. It is so very helpful to others.

While PD is a devastating disease it is clearly better than what you feared. I hope he responds well to treatment and that you have many happy years ahead
 
Thank you NikkiJ
Yes it’s a strange bitter pill to swallow. One side is relief, the other side is shocked…
We just need to adjust to the idea and the new norm. We’re hopeful treatment and physical therapy will manage his symptoms. And hopeful research is getting closer to answers.

Thank you for your feedback on my previous post and to so many others!
 
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