Oromandibular Dystonia and Meige Syndrome- Virgilio Gerald H. Evidente, MD

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  • เผยแพร่เมื่อ 10 พ.ย. 2022
  • Oromandibular Dystonia and Meige Syndrome- Virgilio Gerald H. Evidente, MD presenting from the 2022 Benign Essential Blepharospasm Research Foundation Symposium in Phoenix, Arizona.

ความคิดเห็น • 24

  • @FullTimePatient37
    @FullTimePatient37 ปีที่แล้ว +5

    Thanks for spreading the awareness 💛 it's so hard to find anything on Dystonia and as a sufferer of general Dystonia.. imagine my frustration... along with no effective treatment... I'm very afraid it may take my life my BMI dropped to 12 .. I'm very very desperate to find anything that helps I'm losing my mind 💔💛

    • @meganspencer8198
      @meganspencer8198 ปีที่แล้ว +1

      I have meige syndrome and have not found ...any real answers in the States...except medication or Botox...every 2 weeks for the rest of my life it's painful, I have blehparspams...stress makes it worse...i have tmj. My neck spine and headaches all the time...I feel your pain.

    • @FullTimePatient37
      @FullTimePatient37 ปีที่แล้ว +1

      @@meganspencer8198 I have general Dystonia, it affects me so dramatically, I'm left unable to walk, talk, eat, communicate, parent, read or even watch TV normally..
      Ofc, I lost my Jobs as well as my driving licence a long long time ago 🥺
      I do reviews on things that can help with Dystonia, there's another review on the way for something you might benefit from so much (not asking for you to sub but check out the videos it's hard to type alot due to Dystonia too ☹️).

    • @rajakang7035
      @rajakang7035 10 หลายเดือนก่อน +1

      my mother suffered for 10 years with involuntary jaw and tongue movements tried many different treatments nothing worked but she got alot better with deep tissue botox injections🙏

    • @FullTimePatient37
      @FullTimePatient37 10 หลายเดือนก่อน

      @@rajakang7035 I have generalized Dystonia.. doctors REFUSEDR.

    • @TheSamuellopes
      @TheSamuellopes 10 หลายเดือนก่อน +1

      Hello. I'm Samuel Lopes from Londrina-PR Brazil. I understand your concern about generalized dystonia. The fight is inglorious, but one thing we all must have is determination. I know it's hard to muster Herculean forces every day, but we have no choice. I wish you the best of luck and the opportunity to find a good health professional who can alleviate your suffering. Many innovations in the area are on the way to improve our quality of life. A hug, strength and success for you.

  • @luv2ride74
    @luv2ride74 ปีที่แล้ว +2

    Great video. People just don't understand what OMD is and how it affects people

  • @wedaymydude7794
    @wedaymydude7794 10 หลายเดือนก่อน

    Thank you so much. I have meige. Neck and diaphragm and Hemi and OMD. So useful and comforting to see others.

  • @feliciatolani5329
    @feliciatolani5329 ปีที่แล้ว

    This is seriously disturbing my husband health. Please what assistance can you offer him to get the Botox injections? Or do you have any branch in Nigeria? Will be very grateful if you can be of help.

  • @Texaslife98
    @Texaslife98 ปีที่แล้ว

    I experienced this one time after I vaped while having an open nerve exposed in my mouth due to a open nerve near my teeth.

  • @debbiecook7201
    @debbiecook7201 ปีที่แล้ว

    I have a family member who has this used botox now uses Warrior balm.Stoped spasm.

  • @FullTimePatient37
    @FullTimePatient37 ปีที่แล้ว +1

    Yes it started from my jaw to my eyes..but it's general Dystonia progressive so rapidly..

    • @meganspencer8198
      @meganspencer8198 ปีที่แล้ว +1

      I started with eyes it went down ...meige syndrome...now it's getting to the point where light sensitivity...and little tasks, are hard

    • @FullTimePatient37
      @FullTimePatient37 ปีที่แล้ว +1

      @@meganspencer8198 very sad to know that 🥺 I hope you can manage your symptoms 🙏🏼🌿

    • @meganspencer8198
      @meganspencer8198 ปีที่แล้ว +1

      Same to you

  • @lillyrosado1635
    @lillyrosado1635 9 หลายเดือนก่อน

    I will like to know if Ambien cause Dystonia??? I got all those symptoms

  • @nancybradley7264
    @nancybradley7264 10 หลายเดือนก่อน

    i was diagonosed with focal seizures however started with twitching on left corner lip and progressed to my left jaw opening and jerking cannot talk and have troublie breathing now on xcopri and onfi also lyrica has reduced the problem now wonidering if i have misdiagnosed. had mri and ictle scan and nothing showed up. what should I do this has been going on since age 57 now 61, this happens befor falling asleep but then got worse had happened up to 20x a day.

    • @10and2
      @10and2 8 หลายเดือนก่อน

      MRI scans do not show dystonia. A neurologist or movement doctor would give you the correct diagnosis. Regular doctors usually are not studied in this disorder. And ENT may help as well.

  • @lillyrosado1635
    @lillyrosado1635 9 หลายเดือนก่อน

    I will like to know if the pill ambien could cause dystonia

    • @10and2
      @10and2 8 หลายเดือนก่อน

      Anti depressants and other medications used by psychiatrists have been proven to have long term effects and cause this. Not all dystonia is caused by this though as some have never even taken medication and it spontaneously happens.

  • @vaniaalmeida3795
    @vaniaalmeida3795 10 วันที่ผ่านมา

    Português do Brasil

  • @nigartagiyeva2995
    @nigartagiyeva2995 5 หลายเดือนก่อน

    Help. I,m distony.

  • @FullTimePatient37
    @FullTimePatient37 ปีที่แล้ว

    My jaw moves to the left... there's alot of vids on my channel that may interest you..

    • @Pu1695
      @Pu1695 4 หลายเดือนก่อน

      I would love to see the videos