DYSTONIA: 7 Years until full DIAGNOSIS!

[@FullTimePatient37]

💡Play back speed ⚙️1.25 because of my slow speech due to health. How was your experience getting a (hard) diagnosis, as this can happen to other conditions, how did you get your diagnosis? I was on both keppra and clonazapam at first not only clonazapam.*

[@Musalam]

في صباح اليوم الجمعة أخذتني خوارزميات اليوتيوب لقناتك ولعلها كانت منحة لي لأتشرف بكتابة هذه الكلمات وادعو الله العلي القدير أن يلبسك ثوب الصحة والعافية ويمد في عمرك وأنتي في تمام السعادة والحياة الطيبة، أختي العزيزة الدقائق التي قضيتها في قناتك ألهمتني فأتمنى لك الاستمرار. تقبلي تحياتي.

[@FullTimePatient37]

شكرا لذوقك 🌹 هالفترة مع التعب مش قادرة اعمل فيديوهات بس باذن الله مكملة 👍🏼🙏🏼

[@ehlersdanlosmom6847]

my story is similar. i have generalized dystonia which came on quite rapidly and I've been dealing w/ it for 4 years. I have a condition called Ehlers Danlos Syndrome. My neurologist believes this condition has messed up my proprioception which causes dystonia. We're managing it w/ daily dose of klonopin and a muscle relaxer if I have a bad attack. It's a difficult journey. I was told it was psychiatric at the early stages too, but they now see it is Dystonia. I'm sorry your going through so much, hang in there. I do have good days and bad days. I hope you start having more good ones.

[@FullTimePatient37]

Thanks for the reply 💞 I'm also on klonopin cuz I also have seizures grand mal..it relaxes the body and I'm in cannabis but I have insane limitations I am technically disabled just being able to talk and tap on my phone currently can't do any chore and need supervision almost all times 😔 I hope things will get better after tackling the VP shunt issue hoping for full recovery in this surgery I'm very stressed out 😭 Have you tried baclophine?

[@Zxouf873]

Thanks for sharing your experience 💖 it's such a life changing diagnosis I really hope you will get better with the new treatment 🙌🏼🙌🏼🙌🏼🙌🏼

[@sultantech6986]

It really is😢 17:48

[@muddy5420]

That's absolutely nuts 🫥🫥🫥🫥🫥🫥🫥🫥

[@FullTimePatient37]

I know 😭😭😭

[@sultantech6986]

My goodness this is ALOT to deal with for so many years I really hope you will soon see some improvements 💜

[@muddy5420]

Yeah 🥺

[@loo68245]

I'm very sorry it was so hard to get the Diagnosis 😩 😮 it's shameful 😖😖😖

[@FullTimePatient37]

It takes a very experienced neurologist to diagnose it unfortunately... it's under diagnosed 😖

[@sultantech6986]

It's crazy nuts 😢

[@ImNotEmo-1]

Goodness me 😮 that's awful I'm sorry hope you are doing better ❤

[@FullTimePatient37]

Thanks for understanding 😊 I'm glad I've had the answers even if it was that long 😔

[@muddy5420]

I hoped it'd get better 😢 still hoping 🙏🏼🙏🏼

[@user-bx7kd5jg4q]

شو هالجنان كتير هيك

[@sultantech1351]

That's nuts 😯😯😯😯😯😯😯😯

[@FullTimePatient37]

I know 😔 it's usually like that in Dystonia Drs are not that familiar with it .

[@muddy5420]

Agreed 😢