Road to diagnosis

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Luwayne

New member
Joined
Sep 30, 2019
Messages
5
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
IL
City
Plainfield
I have read the opening messages. Thank you to everyone that takes time out to answer our inquiries.

I'm sure some of you had a long road to diagnosis. Can you tell me what your doctors ruled out before ALS was the final determination. Do they try to rule out other muscle diseases first?

I've been going through the process of diagnosis for about a year now. I've been tested for everything from autoimmune, to various muscular dystrophies. Each time something new happens it seems to stump my neurologist. The latest thought was limb girdle MD. Which I accepted. Forward to a move and now a new Neurologist and she doesn't think it's LGMD. I have voice changes, saw an EMT. My right side jaw has now locked and I can only open a bit. Everything normal, no TMJ. There are many other issues. I have drop foot, positive babinski, my EMG came back with polyphasic changes. I have respiratory issues and use a BiPAP at night only for now.

I'm just frustrated with the process and was wondering if others had a long road to diagnosis and what dr.s looked for before your diagnosis.

Thanks

I'm just frustrated on this road.
 
Hello there- you've posted in the past here about your diagnostic process. This must be very frustrating for you. I'll post your previous thread so folk can have a read first and so there aren't any redundant questions or recommendations:

 
Thank you, I forgot I had posted that.
 
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