Involuntary Movement Not Started Meds

Hi all,

Was diagnosed earlier this year at 47. Symptoms are mostly shoulder issues, some tremor, stiffness and insomnia.

I’ve not started any meds as yet.

I’ve noticed my arms jerking out on their own, usually when I’m very relaxed. It’s like the sudden jerk you get as you are nodding off but it’s always my right arm flailing out and that’s the Parkinson’s side. I’ve read it can be caused by long term use of Parkinson’s meds, but I’ve not started any yet.

Has anyone not on meds, or not long on meds, experienced this?



Hi @JonJoe,

Sorry to hear about your Parkinsons. You shouldn’t experience involuntary movement ( dyskinesia ) unless you was on medicine such as Madopar.

You should try speaking to a Parkinsons nurse and find out what kind of movements you have & why have you been experiencing this considering you’re are not on any Parkinsons medicine.

Hope all gets better.

Hi JonJoe,

If you call our free Helpline, they’ll be very happy to advise you on this issue, and any other Parkinson’s related concerns you may have. You can reach them on 0207 963 9371 or email us at [email protected] Monday-Friday 9am-7pm and Saturday: 10am-2pm.

I hope this helps.

Best wishes,

Moderation team

I was diagosed about 2 years ago. My meds include Madapar 100 mcg 4 times a day and 6mgs of ropirinole at 6pm daily. I had sudden jerky movements before taking the meds, and still have them usually when relaxing. Quite often I have a glass or cup in my hand. I needn’t say more.

I resisted meds until I could carry on no longer. My consultant said my symptoms would improve with Madopar 100/25. They did and I regret to this day not having accepted them earlier.

The medication history

My right arm is the worst too. For stiffness and tremor. Started getting tingling in it after GP gave me antidepressants. I also get jerks (Myoclonus) & flinging (Ballism- severe form of Chorea). And sometimes it wants to turn in (aRM INVERSION – typical of tardive dystonia.)

Be your own best detective. Figure out a timeline of your symptoms/drugs taken & give a copy in writing to GP/consultant. In your GP records there should be a PAGE LISTING drugs prescribed with dates. Check this for accuraCY & to help your chronology. You can ask to see your GP records & they should print out a copy for you.

The Brasic article (see link) has a long list of drugs that can cause dyskinesias

Tardive Dyskinesia Updated: Oct 17, 2018 Author: James Robert Brasic

Drug-Induced Diseases: Prevention, Detection, and Management J.E.Tisdale, D.A. Miller 2010 American Society of Health System Pharmacists

p.210 Chapter 12 Movement Disorders J.J.Chen & D.M Swope

The term drug-induced movement disorder (DIMD) refers to a variety of distinct treatment-emergent, involuntary movements including akathisia, tardive dyskinesia (TDK), dystonia and parkinsonism…

In one study, resident physicians failed to detect or recognize more than 50% of TDK and drug-induced parkinsonism.

Patients with DIMDs commonly present with two or more coexistent movement disorders.

p.227 Parkinsonism

In one study of elderly patients, 51% of newly referred cases of parkinsonism, were believed to be caused by drugs

Chapter 5 Evaluating patients for Drug-Induced diseases J.E.Tisdale, D.A. Miller

p.40 Unfortunately, clinicians are often slow to recognize adverse drug reactions and their associated drug-induced diseases. Sometimes they are not recognized at all

p.41 Perhaps the most important tool for evaluating a possible drug-induced disease is the medication history. Taking a careful history can yield many clues that will help the clinician rule in or out a drug-induced disease

What did the patient notice and when did it start?

How did the problem progress?

Was there a temporal relation between the onset of symptoms and the addition or discontinuation of any medications and , if so, was the timing of the event similar to that reported previously for specific drug or drugs for that disease?

Has the patient experienced similar reactions in the past?

Can the patient provide any in sight into what he or she suspects may be causing the problem?

Did the patient attempt to self-medicate to treat the problem?

If so, what treatment was tried, and was it effective?

Do any treatments or activities seem to make to seem to make the problem better?

Does anything seem to make it worse?

p.45 The patient needs to know the nature of the reaction that occurred, the generic name and traDE names of the causative agent, the generic names and trade names of other medications that might be expected to cause similaR REACTIONs, and whether these agents must be avoided entirely or used only with caution

All of of this information should be put in writing, and the patient should receive a copy to keep with important medical records at home as well as copies to give to each of their other health care providers (eg.physicians, dentists, nurse clinicians, pharmacists).