Movement Disorders Including essential tremor, dystonia and Restless Leg Syndrome (RLS).


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Old 12-30-2012, 11:57 PM #1
americaninberlin88 americaninberlin88 is offline
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Default Deutsch?

Quote:
Originally Posted by Myoklonie View Post
Hello,

I am sorry but my english grammar is not perfect.Im living in germany and I had middle ear myoklonie since 6 months . Both tendon are cut tympani and m. stapedius.
Now I get Botox in my soft palat because of pallatal tremor.
I have a high frequent clicking in my right ear. And I have Autophonie
I get now Valproin Drugs 1000 mg a day
Please contact me
best regards
Sprechen Sie dann Deutsch? Wie ist Ihre Erfahrung mit Botox? Meine HNO-Arzt hat es mit angeboten, aber da ich Hobby-Sängerin bin und es meine Stimme stark verändern kann, habe ich dagegen entschieden. Wie ist Ihre Erfahrung mit Valproin? Wo in Deutschland wohnen Sie? Ich habe auch manchmal Autophonie, was von meiner starken Tubenfunktionsstörung kommt. Manchmal öffnen meine eustachische Röhre zu viel oder zu lange, was zu der Autophonie führt, aber meistens öffnen die nicht wenn die öffnen sollen, z.B. im Flugzeug. Deshalb habe ich seit August Luftröhrchen in beide Ohren. Haben Sie schon wegen der Gaumensegelmyoklonus ein MRT gehabt?
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Old 12-31-2012, 12:57 AM #2
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Quote:
Originally Posted by americaninberlin88 View Post
Sprechen Sie dann Deutsch?...
No sorry! I have used Google Translate service to put your post into English for others to read because I'm not sure that many of our members here speak German. If you don't speak English, maybe you could use a translation service such as Google Translate yourself before posting to make it easier tor others to understand.

Then speak German? What is your experience with Botox? My ENT doctor has to offer, but since I am a hobby singer and it can change my voice strong, I've decided against it. What is your experience with valproic? Where in Germany do you live? I also sometimes autophony what comes from my strong tube dysfunction. Sometimes open my Eustachian tube is too much or too long, leading to the autophony, but usually open not open if you want, for example, the plane. Therefore, I have since August air tubes in both ears. Have you had an MRI because of the Gaumensegelmyoklonus
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Old 12-31-2012, 07:23 AM #3
americaninberlin88 americaninberlin88 is offline
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Originally Posted by Koala77 View Post
No sorry! I have used Google Translate service to put your post into English for others to read because I'm not sure that many of our members here speak German. If you don't speak English, maybe you could use a translation service such as Google Translate yourself before posting to make it easier tor others to understand.

Then speak German? What is your experience with Botox? My ENT doctor has to offer, but since I am a hobby singer and it can change my voice strong, I've decided against it. What is your experience with valproic? Where in Germany do you live? I also sometimes autophony what comes from my strong tube dysfunction. Sometimes open my Eustachian tube is too much or too long, leading to the autophony, but usually open not open if you want, for example, the plane. Therefore, I have since August air tubes in both ears. Have you had an MRI because of the Gaumensegelmyoklonus
Actually, I am a native English speaker, and only posted in German to respond to the post from Myoklonie. Had I found a private message tool (which I am sure there is, but can't seem to locate), I would have sent the message in German to Myoklonie directly. Allow me to translate my original German message more accurately:

Then do you speak German? What is your experience with Botox? My ENT has offered ito me, but since I am a hobby singer and it could change my voice, I've decided against its. What is your experience with valproic? Where in Germany do you live? I also sometimes have autophony, which is a symptom of my extreme eustachian tube dysfunction. Sometimes, my Eustachian tubes open too much or for too long. leading to the auto phony, but usually they do not open when they need to, like on a plane. Therefore, I have had ear tubes in both ears since August. Have you had an MRI for the Palatal Tremor?
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Old 12-31-2012, 09:04 AM #4
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Thank you, AmericaninBerlin88, for helping myoclonie with her
post and language.

I am sure she feels less alone. And thank you for the English translation to help the others here understand.
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Old 02-24-2013, 02:37 PM #5
Myoklonie Myoklonie is offline
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Default Middle ear myoclonus and palatal tremor

Quote:
Originally Posted by americaninberlin88 View Post
Sprechen Sie dann Deutsch? Wie ist Ihre Erfahrung mit Botox? Meine HNO-Arzt hat es mit angeboten, aber da ich Hobby-Sängerin bin und es meine Stimme stark verändern kann, habe ich dagegen entschieden. Wie ist Ihre Erfahrung mit Valproin? Wo in Deutschland wohnen Sie? Ich habe auch manchmal Autophonie, was von meiner starken Tubenfunktionsstörung kommt. Manchmal öffnen meine eustachische Röhre zu viel oder zu lange, was zu der Autophonie führt, aber meistens öffnen die nicht wenn die öffnen sollen, z.B. im Flugzeug. Deshalb habe ich seit August Luftröhrchen in beide Ohren. Haben Sie schon wegen der Gaumensegelmyoklonus ein MRT gehabt?

Hallo,
entschuldigen Sie bitte, dass ich nicht auf ihre Fragen reagiert habe.
Ich habe diese Seite lange nicht besucht.
Ich bin zur Zeit im Krankenhaus und wir werden die Tubenmuskulatur entfernen.
Das Valproin hat eine leicht positive Wirkung gehabt.
Ich habe vor ca 6 Wochen 30 U Botox gespritzt bekommen.
Es hat das Geräusch tatsächlich viel leiser gemacht.
Das Botox sollte nur von einem erfahrenen Arzt gespritzt werden.
Fahren Sie nach Göttingen oder nach München Neurootologie.
Es gibt nur wenige Ärzte mit Erfahrung auf diesem Gebiet.
Die Autophonie ist immer mal mehr und mal weniger.
Ein MRT, Lumbalpunktion etc. habe ich gehabt.

Die Ursache wurde nicht gefunden.
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Old 04-21-2013, 01:41 PM #6
americaninberlin88 americaninberlin88 is offline
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Quote:
Originally Posted by Myoklonie View Post
Hallo,
entschuldigen Sie bitte, dass ich nicht auf ihre Fragen reagiert habe.
Ich habe diese Seite lange nicht besucht.
Ich bin zur Zeit im Krankenhaus und wir werden die Tubenmuskulatur entfernen.
Das Valproin hat eine leicht positive Wirkung gehabt.
Ich habe vor ca 6 Wochen 30 U Botox gespritzt bekommen.
Es hat das Geräusch tatsächlich viel leiser gemacht.
Das Botox sollte nur von einem erfahrenen Arzt gespritzt werden.
Fahren Sie nach Göttingen oder nach München Neurootologie.
Es gibt nur wenige Ärzte mit Erfahrung auf diesem Gebiet.
Die Autophonie ist immer mal mehr und mal weniger.
Ein MRT, Lumbalpunktion etc. habe ich gehabt.

Die Ursache wurde nicht gefunden.
Schade, dass es dazu kommen musste! Aber wenn es Ihnen hilft, dann ist es vielleicht auch gut so. Wie geht es Ihnen jetzt? Das Botox lehne ich immerhin ab, da ich die Muskulatur im Mund zum Singen brauche. MRT hatte bei mir aber schon eine mögliche Ursache gefunden. Meine Arteria basilaris (ein Gefäß im Gehirnstamm) ist gebogen und es soll gerade sein. Das Bogen druckt dann auf die Nerven, die meine weiche Gaumsegel und Halsmuskulatur kontrolliert und daher kommt das Problem. Es wird aber alles nur vermutet!
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