Thought it was dyskenesia but found out it might be dystonia!

[RS313]

Hello dear friends!

recently i wrote about having problems with possible dyskenesia so my Dr has been decreasing my meds and switching from IR C/L to CR C/L with no relief, Symptoms seemed to get worse the more we decreased the doses and now after doing some research on my symptoms i have figured out that it isnt dkskenesia but dystonia i am experiencing It is crazy how similar the symptoms are and after trying several different doses i have finally got some relief and i am on my way to feeling better thank goodness! My doses are as follows 1 25/100 C/L CR every 5 hours 2 hours after each of those doses i take 1/2 IR C/L and i am amazed how much better i feel and how my pain and symptoms have decreased. I am so happy because i was worried that i had possible dyskenesia so soon into my diagnosis. Everyone here has been so much help and you are all a wealth of information and i am so happy to be a part of this group thank you all who comment on my posts and for the knowledge and support! Robyn

[RS313]

Oh i take meds only 3 time a day FYI...

[RickyTikki]

I know right. I spent 3 years just trying to grasp the lingo.

[park_bear]

Great resolution to this issue, Robyn. Yes, it is crazy how similar the symptoms are.

Something for us to keep in mind if someone else posts with this problem.

[RS313 in reply to park_bear]

It's just so crazy to me that my friends on here have helped me way more than my own doctor that's kind of scary I actually read somebody else's post that talked about dystonia that's how I came to read about it

[JANVAN in reply to RS313]

Hi Robyn !! Interesting post, I'm also trying to "fix" my Dosis .......

Can you tell me the difference between Dystonia and dyskinesia.......???

As we say in German : Überbewegungen = "over" = to much movements is that dyskinesia ??

I'm now taking 2 till 3 CR C/L 25/100 most devided in a half tablet. But sometimes it's working sometimes NOT. F.i. this morning (I've worked a lot yesterday, and afterworks Physio-treatmetn) I'm stiff, quick exhausted right site movements, and a half CR C/L didn't work. I've then taking a Mucuna Complex, still waiting for effect.

Should I go for the Mucuna Extract who has 450mg (stands on the box, of which genuin 95% L-Dopa = 427,5mg) ?

EFfect of Thiamine HCL dramatacillaly decreased...... Appointment with a doctor for injections next week !

P.S. : the other posters can also reply !!

[RS313 in reply to JANVAN]

janvan i just googled it on the web and it gave me the differences between the two

[ddmagee1 in reply to RS313]

Yes RobynS, that happened with me, also! Our friend's here, in this forum, who live with PD day in and day out, can help us so much. Being a Dr. clinically assessing PD, and experiencing PD signs and symptoms, and all the ins and outs of actually living with this difficult disease, are not the same. There is nothing like the advice I've gotten from my fellow Parkies! I treasure their sharing their experiences, and it has helped me in many practical ways, on how to deal with the multiple problems that can come, for some people, with progressing PD. There is a special place for the specialist Doctor's expertise too, of course. That goes without saying. One is very lucky if they have a helpful, understanding Doctor, and also has the benefit of a forum, such as this, where people with the same ailment can communicate, and help each other. Before I joined this forum, I knew very little about PD, and my Doctor has told me only needed information, basically. Thanks to all for their help to others with PD, by posting on this forum and sharing their experiences etc.!

[TSonmez]

What is CR and what is IR?

[RS313]

Controlled release and immediate release