Given this ii my first post, I have posted this in Meet aned Greet also.
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.
Hi, I think a lot of consultants are reluctant to confront the new patient with the diagnosis of a major progressive neurological disease after one consultation. If it is PD it will show in due course .....As you say the treatment is the same. for the time being.