I am hoping your joint experiences might be able to shed some light on my current situation:
Almost 12 months ago I began having severe neck spasms and my GP referred me to a neurologist. I also had a mild tremor in my right hand.
On conducting the neurological exam, she noted the following in the follow-up letter to my GP:
Resting tremor in right hand
Cogwheel rigidity in right wrist
Bradykinesia over right hand
Alternative movements of the right hand disturbed
No right arm swing
Walking “en bloc”.
She prescribed me Madopar starting with 50/12.5mg three times a day, moving up in dosage until I noticed an improvement in symptoms (she did suggest an upper limit).
She stated in the letter that this was a trial for Dopa-Responsive Dystonia.
I took it for several weeks with no improvement, but as soon as I moved to taking the 100/25mg 3 times a day, I had almost instant improvement in symptoms.
Given all I have read about both diseases, especially that Dystonia is a common feature of young onset Parkinson’s, I was pretty confident that it was NOT Dopa-Responsive Dystonia.
Following my recent visit to the Neurologist, she has still left the diagnosis as Dystonia, stating, “with this kind of rapid and perfect response (to Madopar), I would think she has developed a dopa-responsive dystonia, rather than Young onset Parkinson’s.”
The conversation about my symptoms was very brief indeed, although she did do one test to look at fine movement in my right hand and noted that this was still poor.
I feel she has become overly focused on the neck spasms and dystonia, and seems to be dismissing all her other findings. She did mention the possibility of a DAT Scan, but was fairly dismissive of it. Part of me doesn’t really care or want an absolute diagnosis: they are both treated in the same way; my symptoms are pretty much under control. But I was just wondering if any of you had experienced rapid improvement with L-Dopa.
Short answer from a female, 69 years old on dx. is yes - on the 25/100 sinemet by 3 times a day improvement within two or three months. I would shake virtually all down one side at times - now the occasional tremor in right arm. Armswing not returned and sometimes find my arm sort of dangling if I don't look out. Writing now normal - was not small but laboured. Fine coordination from frustrating to pretty normal, e.g. double letter typing hardly ever and can touch type as I could years ago. Hips before meds. extremely stiff to the point of developing bursitis in the left hip. Only now two and half years after starting meds. are my hips getting a bit stiff again - was one of the first symptoms 6/7 years ago. PD probably affected hips first because I have always had very tight hips. Other physical and mental improvements also.