Intermittent Slurring for 18 Months

Nikki J

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I am so sorry. I hope like Fiona she is wrong as well as unkind. About 10% of initial ALS diagnoses are wrong I hope your case is one of them.
in the meantime it will not hurt to start recording your voice for your loved ones. As I mentioned elsewhere the Les Turner ALS foundation is having a webinar in a couple of weeks and in part of it they are going to discuss alternatives to traditional voice banking.
i so wish your day had gone differently
 

JodiR

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Thank you, everyone! You're very helpful and I appreciate each of you!
 

lgelb

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There is a whole continuum of conditions that can cause bulbar dysfunction. As you will have gathered by now, an ALS diagnosis mandates an EMG, labs, and any other means necessary such as imaging to eliminate other possible diagnoses, so it was extremely irresponsible to "info sheet and dash," clearly.

I can't say this would give me faith in their EMG and referral. Unless MCW is where they are sending you, I would head to the ALS clinic at MCW, which is likely to want their own EMG anyway. You can still use these people as a referral source.
 
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JodiR

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Yes. FROEDTERT/MCW is where I will go. However, we are moving to Arizona in October. (South of Tucson.) The neuro today mentioned Barrow Neuro in Phoenix. It's a 3 hr drive, but we're willing to drive for excellent Healthcare and we're both retired. I also found out today's neuro specializes in sleep studies and MS, although she mentioned she had another bulbar ALS patient.
 

Nikki J

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I would set up an appointment at Barrow too. if you get a different diagnosis you can always cancel but October is pretty soon and there will be a wait whenever you call plus you would want a second neuromuscular opinion
 

lgelb

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True, and since you are moving anyway, you could see which has earlier availability, UW Madison or MCW.
 

JodiR

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I added a screenshot of the neuro's notes (no personal info) that show the only symptoms I have is a weak tongue and tongue fasciculations. I don't know if this is "normal," but I feel she shouldn't have jumped to a bulbar diagnosis without the EMG, nerve conduction test, blood/spinal, etc. tests. I know that I'm emotional right now and I apologize for all my posts today and I appreciate all of the support from all of you! Thank you!
 

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Bestfriends14

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There's no need to apologize. You have every right to be frightened after the doctor's flippant diagnosis. I don't blame you and would probably be the same. I truly hope your EMG will not show bulbar, but please keep us in the loop.

This will be much easier said than done, but please try and keep busy until your appointment.

Take good care
 
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