Hi Wivanunu.. I was sent to a movement disorder clinic in Toronto to see a specialist. She's very highly recommended and I was diagnosed with Dystonia. She sent me for genetic testing right away and I'll get the test results back as to which type I have. She seems to think I may... *possibly* have Dopa-Responsive Dystonia. ....I'm really hoping so, I can't wait to switch over from Clonazepam to L-Dopa!
I live in Minnesota.....We have the The U of M and Mayo....they will completely diagnose you and they won't stop until you are better! :-) People from all around the world are sent to the Mayo Clinic.
I just read that you live in Canada. I just get so mad at docs that give a diagnosis and change it and change it and change it....just because they never wanted to do the expensive tests!!! My Dad looked sick for so long (not related to your issues) and he kept going in and they blew him off...finally one doc did a thyroid test...it was way off so they gave him synthroid......HE ACTUALLY HAD A PITUITARY BRAIN TUMOR!!! None of the docs ever ordered an MRI...the eye doc found it!!
I was just at my neurologist 2 days ago talking about hemiplegic migraines. There is genetic testing for all of what you have going on. That they give you different diagnoses is crap! Have you had genetic testing....it cost a lot. But, you are disabled when you are like this and those tests should totally be covered! And as far as meds....do they give you Klonopin to make you feel better? What State are you in again?
P.S. I hope your father and yourself are doing well. All the best!
87butterflykisses87 3 months ago
Hi Wivanunu.. I was sent to a movement disorder clinic in Toronto to see a specialist. She's very highly recommended and I was diagnosed with Dystonia. She sent me for genetic testing right away and I'll get the test results back as to which type I have. She seems to think I may... *possibly* have Dopa-Responsive Dystonia. ....I'm really hoping so, I can't wait to switch over from Clonazepam to L-Dopa!
87butterflykisses87 3 months ago
I live in Minnesota.....We have the The U of M and Mayo....they will completely diagnose you and they won't stop until you are better! :-) People from all around the world are sent to the Mayo Clinic.
Wivanunu 3 months ago
I just read that you live in Canada. I just get so mad at docs that give a diagnosis and change it and change it and change it....just because they never wanted to do the expensive tests!!! My Dad looked sick for so long (not related to your issues) and he kept going in and they blew him off...finally one doc did a thyroid test...it was way off so they gave him synthroid......HE ACTUALLY HAD A PITUITARY BRAIN TUMOR!!! None of the docs ever ordered an MRI...the eye doc found it!!
Wivanunu 3 months ago
I was just at my neurologist 2 days ago talking about hemiplegic migraines. There is genetic testing for all of what you have going on. That they give you different diagnoses is crap! Have you had genetic testing....it cost a lot. But, you are disabled when you are like this and those tests should totally be covered! And as far as meds....do they give you Klonopin to make you feel better? What State are you in again?
Wivanunu 3 months ago