Hi, I'm new here and I'm very confused - looking for advice/shared experience. Diagnosed 5 years ago with idiopathic PD, aged 46. Other causes were ruled out by MRI, brain angiogram. It is gradually worsening - tremor in left arm,cogwheel resistance, dragging left leg, great difficulty walking, slowness; all the typical symptoms but progression is apparently much slower than typical. However, despite a horrendous divorce and other difficulties I have never beeen depressed. This seems to perplex the doctors. I'm just very grateful! Started off with Selegeline - no obvious benefit, though might have helped mood. Then tried Neupro patches for 9 months - had a dreadful effect on my already awful walking and no obvious benefits so stopped it. All the time i was taking it I saw huge green spiders, heard voices (luckily very benign, mostly just a few neutral words) and developed mild dyskenesias. Sinemet was next -very scary. I became frighteningly confused - couldn't follow conversations, couldn't work out what was happening round me.Very frightening indeed.It was impossible to function at any reasonable level while on it so it didn't last long. I now take Azilect - again no obvious physical benefit but possibly raises my mood.My biggest fear is that the ineffectiveness of the drugs is because I have MSA or supra-nuclear palsy. I am told this is not the case.
I have an NHS consultant and specialist nurse and also visit a lovely, encouraging, private neurologist once a year.I live alone and try very hard indeed to be as positive as possible, despite often feeling very grim. I am keen to find a drug/combiination of drugs that will help me but all I seem to get are the side effects without any benefits. Even coffee (which apparently can help PD symptoms) has a very unpleasant effect on me, making the temor completely unmanageable and turning me jumpy, twitchy and unable to focus either visually or psychologically. Now my NHS consultant has told me - out of the blue - he doesn't think I have Parkinson's disease because my symptoms and drug reactions are so untypical. He's ordered a DAT scan plus apomorphine injection. Meanwhile my private (much more experienced) neurologist says he is quite sure I have an unusual form of Parkinsons and I should carry on dealing with it iin the way that suits me best. He says he doesn't use DaT scans much himself as he doesn't find they're always very helpful . However it is very difficult to refuse the NHS treatment/investigations as you get labelled non-compliant and generally awkward. I have tried to stick to my guns and refuse drugs which weren't helping but I'm not good at standing up for myself and often agree to thibgs I don't want. I am simply dreading the apomorphine injection. As 60mg of Sinemet sent me, effectively, demented I am terrified of what apomorphine will do. I should be very intesrested on others' experiences.
I must confess that at the moment I feel I am being 'punished' for doing too well. It occurs to me that if I had been a 'good girl' and taken all the drugs that were shoved at me (which I would have done without the support of my private neurologist) I would be much worse - and therefor 'typical' and the doctors would be happy with me. I want to shout at them that reason I'm doing 'too well' is because I have listened to my body and not bombarded it with drugs that made me feel worse.
I seem to have sounded off a bit! Advice welcome!