Hi , has anyone experienced dyskinesia's while on stalevo or levodopa in general ?:)been on levadopa for a year now .

[CheekyChops1973]

I'm almost sure I am having these daily in my foot and is making my symptoms worse then they should do ! Not sure if stalevo is really working for me but been told not too stop them because of neuroleptic malignant syndrome .can you have dyskinesia after a year on l dopa . thanks folks

[Hidden]

Dyskinesias are abnormal, involuntary movements that occur in response to repeated dopamine-replacement therapy , they can be debilitating. the dyskinesias may looks similar to dance-like, constant writhing or wriggling movements of the arms, legs, trunk, and sometimes even facial muscles. However, dyskinesias can also be dystonic (prolonged twisting of body parts), or myoclonic (rapid and random twitching of isolated muscle groups) or other movement disorders, and can become progressively more severe with increasing duration of treatment. From your information it is possible the medicines you are using cause dyskinesia, although my reading is that the onset is usually 5 years plus after introduction of LDOPA. You menition neuormalignant syndrome which is very rare and relates to interactuion of antipsychotics, parkinsons plus syndromes and medicines used to treat parkinsons plus. All in all, it looks very complicated, and my advice is to see a neurologist or parkinsons nurse. The advice from the US Centre for Movement disorders is that you may need to see someone several times to get a good handle on what is actually happening. Best wishes. jmb

[CheekyChops1973]

Thanks jmb . i am seeing neurology nurse next Monday . The only way to describe what's going on at the moment is my big toe goes into a rapid up and down movement as it seperates from my other toes which separate and curl over . all looks very ugly! I have spasms going up my right leg and pain in my thigh muscle on the same side and almost constant stiffness in that side including my arm which is becoming weaker and slower with quite bad tremor at the wrist . I have been told that cbd is likely but that I have definitely got a Parkinson's plus syndrome. Also MRI picked up degeneration in my neck and had positive datscan . when I was first diagnosed I was on sinemet plus 125mg three times a day . now on stalevo 125mg four times a day with baclofen 10 mg three timed a day . not much seems to be helping ! Thanks for your reply . gratefully received . any other advice from you would be welcome . to sum all this up I can rarely keep my foot and leg still and is happening as I type this message

[jimandsharynp]

CheekyChops, If you Google you will find that the long-range side effects of carbadopa/levodopa can be VERY bad for patients. We took my wife off the drug for two reasons. We didn't see it working and fear of the very bad effects from long-term usage of the drug. I'm not sure some of the effects caused by long-term usage can be reversed once they occur. Google and find out for yourself. Check with your neurologist and I'm sure he will confirm this.

[CheekyChops1973 in reply to jimandsharynp]

Hi jimbo . thanks for your advice. Much appreciated. Going to see neurology nurse practitioner next Monday . going to ask her if I can come of levadopa ? I have got an appointment with the neurologist next month . think it may have to be him that makes the decisions as you say . just got this feeling that I may be better without it . I hope you're OK and kind of you to give such helpful advice on here as someone who knows all about it . all the best . . just out of interest I am wondering whether you know if supports etc are beneficial. I am waiting for an ankle brace from the NHS !. Its been five weeks now! I am taking a walking stick out with me now as have to keep stopping !

[jimandsharynp in reply to CheekyChops1973]

CheekyChops, The "motto" of my dear wife Sharyn and I was to try anything for a short time. If it worked we continued if not we stopped it. There are a lot of things that people say work for PSP but there are different thoughts on EVERY suggested thing. I'm reminded of a friend who has PSP and was in the Devanude (spelling) trial. It was a drug they were trying for PSP. Eventually they said that as the result of the trial it didn't work. However my friend swears that he was better while taking it. Lots of things have been tried like Turmeric (spice) and Coconut Oil but most say they didn't work for them. Oh you have a few that swear it works but they are in the minority. Try anything you think might work but if there were a "miracle" out there we would know about it for sure. Jimbo

[ultramodern]

Bonjour Cheeky! My first question?What's the Neurologist's diagnosis....' All this talk about Parkinsons plus is all

a bit of a smokescreen when we have names like PSP or CBD.

My great fear is that taking medication for either of these diseases is a non-starter. Because we know that there is NO TREATMENT for either of the terrible diseases.....not yet at any rate.

So taking treatments that are specific to Parkinsons when dopamine isn't called for to is just poisoning yourself for nothing.

Please excuse my bluntness,CheekyChops, but my late wife was under all sorts of treatment prior to the final diagnosis of PSP. And I honestly think they collectively shortened her life.

Let's hear how you get on with your next consultation.

With you in mind

brian

[CheekyChops1973]

Hi Brian ,

I have been told face to face I've either got PSP ,msa or cbd. The letter the consultant sent to my gp said it could well turn out to be cbd. Further letters refer to Parkinson's plus syndrome . I must say sorry for the loss of your late wife and yhankyou for taking the time to reply to me .

That's exactly how I feel though Brian ,that they keep putting this medication up and each time it makes me worse . course it could be the disease progression. Thanks so much !

[jimandsharynp in reply to CheekyChops1973]

Cheeky, If you have any questions please post and I and others will respond. I have a way that you can get notified of ANYTHING related to PSP that is posted on the internet. Not a lot is posted so you don't get overloaded. However you do find out valuable information about research and other things. If you want the instructions email me [e-mail] Jimbo

[zjillian]

My father had Parkinson's for over 30 years, and yes he had problems with the medication and dyskinesia. I cannot remember what they did but I think he was on too high a dose and they adjusted it. I do know that it went completely away with medication change.

Jill