Brother just been diagnosed, desperate

Hello Belle, I see that things are still not sorted for your brother which I think is appalling. As Saintly7 has quite rightly said you shouldn't have to plead for a consultant, I live in the same area as Saintly7 and I was dx 11 years ago and whilst Ive never had a scan I did get a change of neuro, at my request.

I do believe that there will be more problems of this sort in the future particularly if the GP's take control of the finances and I wonder if this is why your GP is failing to act. I had some problems last year when my GP refused to sign up to 'joint care' with my neuro and to prescribe Apo Morphine which my neuro had advised. I emailed my local MP who in turn contacted the PCT and got it sorted for me.

My advise to you would be to do the same, your brother cannot and should not still be waiting to be seen be a specialist in PD. Whilst your GP is sunning himself your brother suffers. Please tell your brother to contact his local MP, sometimes one has to take the bull by the horns to get some action.

I do hope that your brother's condition improves, sometimes it takes quite a while to find the most suitable drug for people with PD, as what works for one may not work for another. Please do keep us informed about Dave's progress, I wish you luck.

glenchass








Ive never had a scan
Hi belle
I've had severe dizzynessf like I was going to faint but didn't.just one point get info of the net I dx myself before I saw the neologist.also because there are so many symptoms you will see the possibility that it is pd or not.but don't think blackouts is one.dropping to sleep whilst fully awake but not blackouts.

John
Belle,
Just reading though your post and the replies and I may be a bit late but would suggest if your brother has not yet seen a neurologist on the NHS,it will only cost around £60-£100 to see a consultant neurologist privately for a consultation.They will usually then arrange to see the patient on their NHS list from then on and is a way of jumping to the front of the queue. The furthertests and scans can then be done on the NHS. By the way I would recommend the datscan if its avaialble in his area...I just got my results and they are excellent in diagnosing Parkinson's and how severe the dopamine problem is.Hope it's sorted soon.
Sorry forgot to say that seeing a consultant neurologist privately can normally be arranged within a week or two depending on their schedule.
I think your brother has been treated very shabbily, and I would ask for another opinion, (ie another doctor to look at him).
I would also insist on seeing a Parkinsons specialist, rather than a general neuro.
If he has got Parkinsons, and the symptoms he is exhibiting are as aevere as it appears, what is the point of delaying giving him l-dopa????

As to sytmptoms, every Parkinsonian is different, and our reaction to the meds are also very different. I have been diagnosed 10 years, and I am still experimenting with times and dosages (with the agreement of my lovely Neuro consultant, to whom I report my results.)