My mum was diagnosed with Parkinson's a few years ago. The medication she is on makes no difference to her symptom....ie a shaking right leg, that is all. She discussed her symptoms with the PD Nurse and they increased her dosage...this didn't work and the side effects were bad, so they decreased the dosage....symptoms are still the same and she has asked at several visits what she can do and they have suggested....increase the dosage, which she did again. there is still no difference although she is not experiencing the same side effects she did last time. She is on mirapexin....they have not suggested/tried her on any other medication. I'm wondering whether we should be asking for a 2nd opinion at another hospital. My mum is worried about asking incase she upsets the PDN she currently sees. Anyone know how best to put it to them that we woudl like a 2nd opnion as they are not really doing/suggesting much? she has seen the Consultant on few occassions and all he asks her to do is walk along the corridor and back....and comments on how quick she is....very bizarre!
Hello Nerak 1963
First and foremost did your Mother have a DAT scan for her diagnosis, if not I think she should ask her GP for an appointment with another Neurologist,or even request that her present Neuro arranges a DAT scan for her .This way she can be sure she has the right diagnosis.
It is most unusual for her symptoms not to have ceased when she is on medication.
I found a second opinion a great boost.
Firstly the confirmation of the diagnosis. If you see the PD check list of symptoms any one of us will only have typically 20 to 30 % of the symptoms. I filled in a check list for my carer and she had a higher cope than me, but does not have PD and is "normal person"
Secondly you will be seeing the neurologist for the rest of you life ..... unless we find a cure ..... so better get on with her / him. Also there are the support services at the neuros hospital.,
Thirdly any carer will also get more of a buy in and possibly a better understanding of PD. You will probably ask more and different questions second time around.
I was unhappy with my first neuro who worked at a small local hospital. My second opinion was at a National hospital where the neuro said the right things and the support servies are excellent
They won't suggest a second opinion. You(or the patient) just ask your GP for a second referral, everyone is entitled to it if there is doubt or if you feel it could be a misdiagnosis. Another way of doing it is going for a once-off private consultation with a PD(or movement disorder) specialist, but it should not be necessary, second opinion should be available on the NHS.
It is very well possible that the Mirapexin is not doing very much, apart from the side effects. What is the dose?
You do not say how old your mother is. If over 60 maybe she could start with a levodopa containing drug. Good response to that would confirm the diagnosis of PD.
The for main symptoms of Parkinson's disease are tremor, slowness of movement, muscle rigidity and poor balance, however not everyone with Parkinson's develops all of these symptoms.
Unfortunately, tremor is one of the most difficult symptoms in Parkinson's to treat but there are other drugs available which are more suitable to treating tremor. You mention the consultant asks your mum to walk up and down and comments on how quick she is? He is checking for slowness of movement and possibly response in your mum's motor symptoms to the medication she is currently on. Prior to medication what were your mum's actual symptoms - does the consultant have past history of your mum having problems with movement to make a comparison to or did she have the tremor alone?
These are all questions i'd ask and if you don't get no joy i'd certainly look for a second opinion.
Please see the following links http://www.parkinsons.org.uk/pdf/FS48_Diagnosisandscans_1108.pdf http://www.parkinsons.org.uk/pdf/FS94_Parkinsonsandtremor.pdf