Thanks Doc. I feel lost Will Robinson.

While I do have chronic pain, it's not the pain that gets me down. It's the disability. The constant day after day struggling to get out of bed only to sit in the lounge and look at four walls.

My life is interspersed with medical visits and hospital visits but very rarely anything social. It's been almost 4 years since I could drive or work and I can't take my motorised wheelchair on the buses here. I either have to catch maxi taxis (very expensive and reserved for medical visits) or the community bus (requires booking many days in advance, but is a good service) or the ambulance. The ambulance won't take the wheelchair and I can't climb up the steps, so I have to go everywhere on a stretcher and have no independence at the other end.

You are right about stereotyping Neuros but there aren't many to choose from where I come from and they are a little community in themselves. The second one I went to was a lady Neuro and as soon as she saw my referring letter, that I wanted to change Neuros, her whole attitude changed. She changed from welcoming and pleasant to terse and abrupt. She never examined me and I was out the door within 5 minutes. It's not as if I make a habit of doctor shopping or criticising one doctor to another because I know that's instant Coventry. I had only ever been to that one previous Neuro, one previous Oncologist, one previous Physician (whom I'm still with). I had been with the same GP for over 20 years until he retired. I agree that she did say that she knew nothing about my illness and she specialised in MS but I keep getting told that I'm the only one with this disorder in Australia. I'm not going to find a Neuro who knows about my problem, so does that mean no medical care at all?

My old Neuro was okay until he presented a paper at the Oceanic Congress of Neurologists about my case. He would display me to his med students, residents and registrars. I was used for their exams. Then one day he just didn't want anything more to do with me. I don't think I did anything to precipitate this. I keep wondering what I did. He is an educated, intelligent, knowledgeable person....so it must have been something I did.....but what?

Anyway, I must move on and accept the fact that I no longer have any Neuro input and probably never will. I tried a couple of other Neuros but some aren't accepting new patients at all and a couple only accept patients that fit their speciality....eg...TBI, MS etc. the one I was interested in seeing, specialises in Movement Disorders but there is a 14 month wait for an appointment and only if he accepts the referral (you have to be interested in DBS).

You were right to pull me up about generalising about Neuros.....damn silly of me. Sometimes I think the brain damage is causing mood swings but again, maybe it's just an excuse for my behaviour. The psych told me that he wants me to go back to some kind of work. He said that I'm too driven and intelligent (blush) to sit staring at four walls all day. I have worked since I was 14 years old and now I'm 57. I chose to have a career over family, unfortunately I can no longer do that kind of work because it was physically active.

Sometimes I feel like nothing is ever going to change and I'm going to keep sitting in my chair staring at four walls and waiting for God. Then other days I feel that something is just around the corner and things are going to improve. If I didn't have the days of hope it would be awful.

I think I've reached the acceptance stage (just bypassed anger on the way, until now) but accepting reality doesn't mean accepting defeat.

Thanks for taking the time for a good debate and conversation.....I miss face to face banter. Always loved a good argument or debate. Oh, and I'm learning to accept truth and criticism (only took 57 years).