I'm new to this forum so forgive me if I get some of the lingo wrong!!
My mum was diagnosed with Parkinsons last year, she doesnt have the shake but she has trouble moving, especially her right arm and legs. She has been on a couple of different types of medication which unfortunately havent given her the relief from her symptons that we expected.
She went back to the hospital for a check up this week and was told she may be Ldopamine intolerant, so they have double her dosage for a few months but if this doesnt have any effect she will come off the medication completely as it obviously isnt working.
I am concerned about what this will mean for her, I understand this will not have any effect on the rate of progression of the disease but cant help but think without the medication she may be in a worse way sooner.
Is anyone else in this position or have any advice for me or her?
I would be happy to hear any comments as I dont really know who else to turn to for advice on this.
My understanding of Parkinson's is that a defining feature of the disease is it responds to dopamine therapy. If your mother is not responding, I would question the diagnosis- get a second opinion. There are other conditions that give Parkinson's-like symptoms. I am not a clinician, so this is just an informed gut-reaction.
There is apparently a very small percentage of PwPs for whom levodopa does not work. It must be very difficult for this minority. It does not mean they do not have PD. If it was that simple everybody could be given a levodopa test to decide the diagnosis , much cheaper and less intrusive than a DAT-scan.
Concerned daughter, did your mother have an MRI scan when she was diagnosed? This is often done to exclude other causes (vascular) for her symptoms than PD. Did an experienced neurologist diagnose her? It is of course possible they want to revise her diagnosis, that is not that unusual. With the passing of the months the symptoms can start to look less like PD and more like something else.