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  1. Second Opinion

    Your symptoms are exactly like mine. Feel free to reach out. I know what hell this is.

    Your symptoms are exactly like mine. Feel free to reach out. I know what hell this is.
  2. Second Opinion

    Necessary?

    Ahh okay, thank you. I also forget to mention, I did have significant testing, to rule out mimics. Everything has been negative. Unfortunately 😞
  3. Second Opinion

    Necessary?

    Hi, Nikki- thanks for your response. Excuse my ignorance, but what is frs? Thanks for clarifying. I have abnormal clinical findings, and documented symptoms, but nothing else, as of yet. I’ll just continue to try and take care of myself, and live life, in the meantime!
  4. Second Opinion

    Necessary?

    Hi, all! Still in this crazy diagnostic limbo. Had a question in regards to such. My neurologist has stated due to my ‘clean’ EMGs and only a score of 46 out of 48?, it’s a wait and see approach. She stated I am unable to accumulate points for palate and nasal weakness, and only for speech...
  5. Second Opinion

    Necessary?

    Thank you, I will message her. Or maybe I’ll just take a mental break and do some meditating over the next week or so. These last five months have been a wild ride, and the stress has been overwhelming. I am certainly not getting better, and progressing whatever this may be, but I have been on...
  6. Second Opinion

    Necessary?

    Hi, Nikki- She said PROGRESSIVE Bulbar Palsy. I asked her to repeat. I even stated that I had come across that and read about it, and her response was, yeah.. I am sorry, but no diagnosis I give you, is going to be a welcoming one. I am so confused. Wouldn’t that have been picked up on the EMG?
  7. Second Opinion

    Necessary?

    I am literally just as confused!! My neurologist could not perform the EMG- one of her colleagues did. He stated everything was normal, and I will hear from Dr. Meyer. She called me late afternoon, and was going over some things. She noted, my hoarse/raspy voice along with my slurring, which...
  8. Second Opinion

    Necessary?

    Well today, I had my 3rd EMG, since March. EMG sampling of selected muscles of the left proximal and distal arm, left sternal mastoid, right genioglossus left corrugator, orbicularis oculi and orbicularis oris was normal. No acute denervation, abnormal activations, myokymia or myotonia was...
  9. Second Opinion

    Necessary?

    Thanks, Nikki- I’ll report back, tomorrow.
  10. Second Opinion

    Necessary?

    Tomorrow is my EMG. I am not nearly as anxious, as I was with my previous two. I didn’t realize until recently my neurologist was not performing the EMG. She is currently booked out far, and wanted me in ASAP- I am seeing one of her colleagues. She did state, she was gong to try and ‘pop in’...
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