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
 

JodiR

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Quick update. I had my EMG and nerve conduction test today. A different neurologist conducted the tests than the horrible neurologist that gave me my initial neurologist exam several weeks ago. The doc said that everything was pretty "normal" and showed very minor fascs in my lower leg. His only concern was moderate fibrillations in my tongue. He will post the results to my chart after he shows them to my initial neurologist. Here's my issue-- I'm sure today's doc saw that the initial doc noted "bulbar ALS" on my chart. Today's doc was wrapping up my exam and I said, shouldn't you be checking my tongue and neck (sterno)? He said, if you want me to, I will. I said I think it would be a good idea. What the heck??? I asked him directly if he felt today's tests indicated ALS. He said that he could not and would not diagnose ALS at this point. I just can't wait until 9/22 when I see a neuromuscular specialist at the Medical College in Milwaukee. I'll post the EMG results when I have them. Thanks everyone!
 

Nikki J

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Well I guess moderately good news? At least the emg did not show full blown ALS. I know it is hard to wait for the appointment. Try to keep busy
 

JodiR

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Thanks, Nikki. My thoughts exactly. Also, whatever it is, it's progressing at a very slow rate-- also good news.
 

KimT

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Hi Jodi,
I've been following your posts. Your very slow progression is indeed a good sign, even if it turns out to be ALS. A neuromuscular specialist will be able to give you clear picture of what he/she thinks is going on.
You sound like you have a lot on your plate so take some time to do things for you.

Wishing you the best and hoping for something other than ALS.
 

JodiR

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Thank you, Kim. Everyone here is so kind and I appreciate each of you. This is a fight that none of us want, but it gives me a great sense of community to be able to exchange messages here.
 

JodiR

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Good evening. I have attached four files that summarize the results of my EMG and nerve conduction test. All in all, it's not horrible (in my opinion). Looks like I may still have ALS (or some motor neuron disease), but most of my nerves look good (for now). I'm still seeing a neuromuscular specialist at the Medical College on 9/22. Thanks for taking a look.
 

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Nikki J

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As you thought after the emg not diagnostic of ALS but some abnormalities. I am sure another emg is in your future. Did you also book an appointment at Barrow? Since you are moving soon I would definitely do that especially as you may not get another emg done where you are now. That you do not have a diagnostic emg yet says this is very slow if it does turn out to be ALS
 
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