Seeking Knowledge

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Jennhartv

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Joined
Aug 19, 2020
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Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
TN
City
Nashville
Hello! I just got back from my emg/ncs test (normal, yay!) and was a bit overwhelmed in general, causing me to forget to ask some important questions!! Mainly, what diagnoses are left on the table for me?
Here is what I'm looking at so far:
-clinically diagnosed muscle weakness/atrophy
-hyperactive leg reflexes
-fasiculations
-normal emg
-normal brain/spine mri
-normal CK bloodwork
-negative MMN (I can't remember the name of the bloodwork for this one)

I have my next Neuro appointment in 2 weeks, but I'm just feeling a little lost and was hoping someone here would be familiar with more rare (I guess) als mimicking diseases?
Thank you so much for your time!!

P.S. I know waiting to talk to my neurologist is obviously my best source of info, but please humor me.
 
sorry, you need to do this with your doctor - we are not a general health forum. we are dealing with a terminal illness so sorry we don't humour people without ALS symptoms nor signs on clinical exam and EMG.
All the best, so glad you do not have ALS.
 
I'm very sorry. I thought the description for the forums said ALS and MND. My apologies.
 
Jenn, the list of possibilities is still very long, though you've eliminated many serious dx. My advice is to complete neurologic [and maybe rheumatologic and/or endocrine] evaluation, and see what that yields. Nutritional imbalances, infectious diseases, and adult-onset genetic disorders are all worth ruling out.

Best,
Laurie
 
as Laurie says there are lots of things that are not MNDs Were you wondering about pls? With only hyperreflexia as possible UMN signs that is highly unlikely. Obviously you have something going on but from what you have said MND is not loking like the answer. It sounds like your doctor is doing the right things. If you aren’t at a major medical center and you stop making progress in your rule out you should go to one. The more obscure your diagnosis the more this is needed

i hope you find something treatable
 
HI Jenn, yes this forum is also supposed to include MND, not just ALS. I have PLS and also have the first three things on your list, although fasciculations are usually more of an lower motor neuron issue. But the PLS group I’m in, most also have them As well. I’ve also had clear MRI’s and usually an EMG only rules out ALS, but not other MND. Many of those are only discovered by process of elimination. Sounds like you’re on the right track. Keep working with your neurologist to check everything off the list so you can figure out what’s going on and start treatment. My best to you!
 
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