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Tongue atrophy/muscle loss in tongue

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billw5012
billw5012

Hello everyone and sorry for the pain and suffering you or your loved one is going through.  Has anyone seen a wasted, atrophied tongue like mine?  Neuro said possible Bulbar ALS but not confirmed.  Going to the ALS clinic in a month and tired of waiting. Tongue and mouth have incredible feeling and taste (saliva) sensations.  I have searched the net and only found a couple of examples like mine. 

Question is: Has anyone seen an atrophied tongue like mine?

Thank you very much,

Bill

0 likes, 3 replies

3 Replies

  • Khaled2002
    Khaled2002 billw5012

    Posted

    I am 55 years old , and I have the same as well as my right arm is getting weaker every day.

    and what I have is Bulbar ALS which has been confirmed.

    Please ;if yo u find any cure do share it with me my email is

    thanks

    Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

    • billw5012
      billw5012 Khaled2002

      Posted

      Hello Khaled2002,

      I am 58 yrs old and so sorry you were diagnosed with Bulbar ALS.  I'm waiting on the clinic to confirm my diagnosis and have little hope there is a cure out there.  How are your symptoms?  My mouth and tongue feel like they're dieing but I still have mobility.  I guess Bulbar will take your respiratory and food intake first then the rest of your body will follow.  So sorry anyone having to go through this and will keep you posted on any future diagnosis.  Good luck Khaled2002!

      Bill

  • billw5012
    billw5012

    Posted

    Just wanted everyone to know, diagnosed with PBP on 1/12/18 and going to the ALS clinic 1/23/18.  If you start to notice extra saliva in your mouth and in one or two nights your tongue loses half its muscle tone (atrophies) then I would certainly get this checked out by a neuro.  

    Thanks,

    Bill

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