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Post by Lisa on Jun 15, 2004 19:56:16 GMT -5
I thought we could all join with those with the same condition for a little extra support.
So feel free to introduce yourself and let others know how long you have been suffering.
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Post by Seanyboy on Oct 24, 2004 5:38:18 GMT -5
My name is Sean. I am almost 21 and a healthy guy apart from a previous over active thyroid. I have recently been suffering from these bizzare vibration/fluttering sounds in both of my ear. I believe it is a muscle spasm as i sometimes get involuntary muscle twitching of the eyelids and other parts of the body. I have seen my ENT and he said that it could be palatal Myoclonus! or the tensor tympany muscle twitching! He said the best thing to do is to accept the comdition or learn relaxation techniques. I feel really haunted and it is affecting my sleep concerntration and giving me psychological stress. does anyone know anything that i could do? or not do! It is different to ordinary tinnitus because with this form of tinnitus i can also feel it!!! Please help as i am suffering slowly but surely!
Many thanks
Sean
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lib
Full Member
Posts: 28
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Post by lib on Oct 24, 2004 12:18:07 GMT -5
hi seanyboy,
find a new ent and see a neurologist also, there are treatments for this condition, drugs, botox and surgery, they need to figure out what is going on, is it pm or tt, my doc does not believe in learn to accept it until all options have beed exhasted....
what are your exact symptoms?
read my posts and let me know if you can relate to any of it.
lib
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Post by caroli on Jan 20, 2005 17:26:48 GMT -5
Hi everyone ! My name is Carol and I'm new. I've been diagnosed with palatal myoclonus after a year-and-a-half of running from doctor to doctor. The good news is, I actually believe this diagnosis. I am not very computer savy and posted my long, frightening story under the heading "Presence of Myoclnus in your life" Sorry, but I'll figure it out eventually! Please read my story as I'm sure several of you will relate.
Sean, I agree with lib. You need to see the neurologist. Don't give up!! Never give up!! This is not stress and there are things that can be done.
Hang in there. Carol ;D
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Tami
Junior Member
Posts: 3
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Post by Tami on Mar 2, 2005 7:56:48 GMT -5
Hi Sean and Carol,
My name is Tami and I have been recently diagnosed with Palatal Myoclonus, Sean my symptoms are the same as yours. Carol I couldn't find what you wrote??? My story is very long... I have been been miss diagnosed for 10 years and have had two surgerys. I am 31 yrs old now, I hope we can chat back and fourth to see about treatment etc. My email is tlfoster525@yahoo.com, I would like to be in contact, with you both. I am about to fly to NYC to see Botox as treatment. Please be in touch if you have time.
Thanks Tami
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