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  1. K

    Extreme dysphagia, diagnosed with "unspecified autoimmune", would like some input

    Re: Extreme dysphagia, diagnosed with "unspecified autoimmune", would like some input Wanted to update this. The doctor placed me on steroids after an exacerbation of symptoms while waiting for my IVIG treatment. I am paying more attention to my body this round of steroids and my fasciculations...
  2. K

    Extreme dysphagia, diagnosed with "unspecified autoimmune", would like some input

    Re: Extreme dysphagia, diagnosed with "unspecified autoimmune", would like some input So my doctor has decided to proceed as if this were CIPD or at least some sustained autoimmune reaction. I will be getting my first IVIG treatment this week. Wish me luck. No idea why the EMG isn’t coming...
  3. K

    Extreme dysphagia, diagnosed with "unspecified autoimmune", would like some input

    Re: Extreme dysphagia, diagnosed with "unspecified autoimmune", would like some input The doctor would like to explore CIDP. Apparently one of the symptoms I'm having, which I didn't even talk about, a "burning sensation" under the soles of my feet and in my toes, are characteristic of the...
  4. K

    Extreme dysphagia, diagnosed with "unspecified autoimmune", would like some input

    Re: Extreme dysphagia, diagnosed with "unspecified autoimmune", would like some input Well... this holiday has been difficult. I get tired when I speak too long and swallowing starts out ok but difficulty swallowing has just turned into tired swallowing. Like literally I have to take a nap...
  5. K

    Extreme dysphagia, diagnosed with "unspecified autoimmune", would like some input

    Re: Extreme dysphagia, diagnosed with "unspecified autoimmune", would like some input I'll ask him about it, I'm compiling a list. Unfortunately I think all of my medical stuff is on hold for a week or so while we're all on Thanksgiving holiday. I'm just going to try not to think about it all...
  6. K

    Extreme dysphagia, diagnosed with "unspecified autoimmune", would like some input

    Re: Extreme dysphagia, diagnosed with "unspecified autoimmune", would like some input Only MRI on brain, no full spine - made sense though, I don’t have much if any complaints lower than my cranial nerves. Not sure about the ANA, I’ll maybe ask him about I soon. They tested for so many...
  7. K

    Extreme dysphagia, diagnosed with "unspecified autoimmune", would like some input

    Re: Extreme dysphagia, diagnosed with "unspecified autoimmune", would like some input Thanks for your thoughtful reply. There were a few incidents but it's hard to connect anything, you know? I first noticed choking on food way back in April, but it was occasional and I just thought it was...
  8. K

    Extreme dysphagia, diagnosed with "unspecified autoimmune", would like some input

    Re: Extreme dysphagia, diagnosed with "unspecified autoimmune", would like some input Battery of tests is EXTENSIVE. All blood metabolic pannels, absolutely no pathogens (they tested for Lyme, Cryptococcal, syphillis, lots of other rare ones), spinal tap came back clean with no indications of...
  9. K

    Extreme dysphagia, diagnosed with "unspecified autoimmune", would like some input

    Extreme dysphagia, diagnosed with "unspecified autoimmune", would like some input I have done the math, and I'm a statistician - getting diagnosed with ALS is extremely rare. For someone like me, younger than 30 (I am 29), it's even more rare. On top of that, "bulbar onset ALS" is an additional...
    • kpareed44
    • Thread
    • als autoimmune back battery brain bulbar bulbar onset choking diagnosed diagnosis dysphagia food neurologist onset problems steroids stroke swallowing symptoms tests tongue twitch unknown video
    • Replies: 17
    • Forum: Could this be ALS?
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