Thought it was dyskenesia but found out i... - Cure Parkinson's

Cure Parkinson's

25,336 members26,637 posts

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

RS313 profile image
9 Replies

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

Written by
RS313 profile image
RS313
To view profiles and participate in discussions please or .
Read more about...
9 Replies
RS313 profile image
RS313

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

RickyTikki profile image
RickyTikki

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

park_bear profile image
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 profile image
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 profile image
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 profile image
RS313 in reply to JANVAN

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

ddmagee1 profile image
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 profile image
TSonmez

What is CR and what is IR?

RS313 profile image
RS313

Controlled release and immediate release

You may also like...

Not enough dopamine for Dystonia vs. too much dopamine creating fatigue and daytime sleepiness.

about how to minimize the amount of meds I am on because the extra meds didn't help dystonia much...

Anyone out there trying the Dr. Tass Vibratory therapy with a board or gloves?

controller. I have been using it every day for about three weeks for about 1-2 hours a day. I have...

Dystonia: WTF?!

becoming the symptom I fear and loathe most. During my 8 years with PD, I’ve been conscious of...

Botox for dystonia

I was having muscle spasms in my neck ans shoulders. My neurologists injected my neck with Dysport...

DBS Induced Dystonia

stimulation there is some relief but then I cannot reach the window of symptom efficacy. Even small...