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Finally a solid diagnosis!

Discussion in 'Your Living Room' started by Megan Henry, Dec 10, 2019.

  1. Dec 10, 2019 #1
    Megan Henry

    Megan Henry Member

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    My sole intent of sharing this to give anyone here who is suffering some hope. I was recently diagnosed with an autoimmune disorder called pernicious anemia. My body does not make enough red blood cells and guess what? The symptoms include disequilibrium, tinnitus and ear fullness among others! Holy crap! I had this from birth, but the symptoms are now just presenting.For anyone going through this hell, just know it absolutely does get better, you will figure it out! Keep going and searching. I understand I'm very fortunate to not be debilitated by this, but so many are and I deeply empathize. There were several days I would break down and cry, feeling alone and hopeless. If you are reading this and feel that way, allow it and then get back up knowing this beast does not own you nor will it ever because you are stronger and more resilient than you realize. I appreciate this forum so much! Without it I would be so lost and confused.
     
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  2. Dec 10, 2019 #2
    Gardengal

    Gardengal Member

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    How were you diagnosed? What is the treatment? Happy for you!
     
  3. Dec 11, 2019 #3
    MaryR

    MaryR New Member

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    So glad you found some answers Megan!
    Was this diagnosis through your work with the Functional Neurologist? I’m so interested in exploring this for my Menieres.
    Thanks for the encouraging words.. your optimism and positivity is so appreciated. my new mantra is “things could always be worse”.
    xx,
    Mary
     
  4. Dec 12, 2019 #4
    Brother_of_Nool

    Brother_of_Nool Member

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    That’s great! I once thought that my red blood cell count might be an issue, but my doctor disagreed. I’m going to see a new doctor in a few months and I’ll bring this up.
    Question: do you have any hearing loss? If so, did your doctor say anything about getting any of it back?
     
  5. Dec 14, 2019 #5
    meemil

    meemil New Member

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    Amazing news, Megan! Must feel great to finally have a real cause rather than just idiopathic one.

    I have actually battled with similar symptoms for an year (diagnosed cochlear hydrops) and looked into your first thread. I find it interesting that both of my ears started acting up pretty much same time too and I'm young (21), so maybe I should look into autoimmune possibilities as well. What kind of doctor gave you the diagnosis?

    Cheers
     
  6. Dec 15, 2019 #6
    Megan Henry

    Megan Henry Member

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    The dr. who gave me the diagnosis was a functional neurologist. I do have some slight hearing loss in my right ear, but nothing terrible and yes, I'm noticing I don't have to listen to music as loud. Treatment is the autoimmune protocol and intensive vestibular rehab. We shall see. The weather still really sends me into the deep end though! Have to just keep going and hope for the best.
     
  7. Dec 15, 2019 #7
    Megan Henry

    Megan Henry Member

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    I would highly recommend seeking out a functional neurologist.
     
  8. Dec 15, 2019 #8
    Megan Henry

    Megan Henry Member

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    Indeed it was! I appreciate your kind words Mary. I try to stay positive, but I'm not always the best at it. Things could always be worse, but I know that what we are going through is not for the faint of heart. We are a bunch of badasses!
     
  9. Dec 15, 2019 #9
    recoveringoptimist

    recoveringoptimist Member

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    Very interesting, Megan. I'm happy you were able to get a concrete diagnosis and some answers as to how your condition might be addressed. The mystery of the root cause of these symptoms is extremely frustrating, so just to have that must feel great.

    This makes me curious about my own condition as my symptoms are the exact ones you've mentioned.

    What type of tests did your neurologist put you through to arrive at this diagnosis? Did your neurologist suggest that with the auto-immune protocol and vestibular rehab you might be able to get these symptoms to subside?
     
  10. Dec 15, 2019 #10
    Kevinb003

    Kevinb003 Active Member

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    congrats! I hope you find relief soon with this new diagnosis--happy for you!
     

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