Marcelle's message to Shay

This video is about my choreoathetosis. It's a response to a video Shay made after I asked her some questions via email.

Category:

People & Blogs

Tags:

• choreoathetosis
• paroxysmal dyskinesia
• dystonia
• ballism
• ballismus
• movement disorder

[Pienie8]

Sorry I promised a video update and then nothing happened. All hell broke lose on my end. :( I gave a quick update in two new bulletins, and have some video material ready to be converted to youtube format. This time there really will be video updates soon, and the first update will be me in normal mode! :)

[zabata1234]

Marcelle...How are you doing now good friend?

Please email me on this email if possible: omarhamdyz@gmail.com

[Pienie8]

@zabata1234: I just posted a little update, and I will have a video update soon. How are you doing?

[kaazoom]

Thank you for sharing your story. It is good that people with these types of disorders are using youtube to raise awareness. It helps people to know they are not on their own

[Pienie8]

@kaazoom: Thank you for your message. Yes, seeing Shay really helped me. So if I can help someone else to not feel alone that would be absolutely wonderful! :)

[Niloy63]

Thank you so much for helping me understand choreoathetosis. I'm a medical student, and I can tell you that my classmates and I sincerely appreciate wonderful people like you helping us understand the human side of this. I admire your ability to help educate us. You're awesome!

[dutchman983]

Aan je reactie, goed om te zien dat je er maling aan hebt.. .

Mijn persoonlijke mening: je bent een mooie dame! (hopen dat ik nu geen ruzie krijg lol ;) ). En je spreekt overigens wel heeeeel goed Engels! Gr. Richard.

[audia32000]

Marcelle, dank voor je reactie. Blijf wie je bent. Kat ook o.k.? Die kleine dingetjes doen 't!

p.s.: Kan je in Ljauwerd schaatsen?

[jcsjohnson]

@Pienie8 Ha sweet, thanks for the details. I"ve only seen choreathetosis in the limbs so it was intersting to see it in the torso.

[Pienie8]

@jcsjohnson: Ah, a medical student! The syndrome I'm told I have is Paroxysmal Kinesigenic Dyskinesia. My neurologist keeps telling me how incredibly rare this is. Officially the cause is idiopathic, but it's thought to be most likely caused by autoimmune/inflammatory processes (most likely sarcoidosis, but as of yet this is unconfirmed).

[jcsjohnson]

@Pienie8 oh sorry.. i will remove my comment.. thanks for posting the video, as a medical student it was very educational for me... thanks for sharing :)

[zabata1234]

I am very good..thank god! I am happy to receive your message today..I have a tough exam tomorrow and I feel really good receiving your email before taking this exam.

I wish you the best and I pray for you for real..Take good care of yourself Marcelle..