I had my annual check up at London Ataxia centre yesterday , and I have to say it is chaos and so disorganised there. I had to wait for 2 hours to be seen, and when I was seen Dr Guinti was stressed and rushed because there was still 10 people waiting to be seen. They obviously need another doctor or an extra day for appointments, so you don’t go away feeling " I wish I asked that ". I also saw Liz the specialist nurse and she was brilliant, but it is Dr Giunti you want to spend time with. Sitting there you realise how diverse this condition is., you can’t help people watching wondering what strain they have and how they compare to you.
I had the same thing with my Neurologist! I was rushed out of the office as well. I had to wait a year for the appointment.
I entirely agree .. nothing has changed over the years despite them having volunteers there to take your feedback.
I realise that our being referred there gives them a database of patients from which they can compile meaningful statistics for future research. However, we are there to learn about our condition and hopefully find a way to manage it.
It doesn't really help to know what type as individuals have different progression anyway.
I presume that what we are all there for is to be thoroughly tested to determine whether we have a condition that can be treated. Once that is ruled out, we just need support from therapy team.
We all have problem with exhaustion and waiting for hours is really not acceptable.
I have asked if I can be referred back to local hospital but was persuaded not to and now just see Nurse Liz although I haven't been for two years. Nurse Liz will always give support by email.
I also asked my GP if I could be referred back to local hospital and he also persuaded me not to. I don't know how else to go about it.
I guess I shall just manage my condition myself with exercise and diet and hope for the best.
Patsy, your last sentence says it best which it's what I'm doing. I've given up on Neurologist. My Dad who had ataxia never had a Neurologist and he did alright. It amazes me that there are Doctor's out there who doesn't seem to have compassion care and who are in business for what's in it for them. I think research is great. However, we are patients, not victims. We all struggle with ataxia, some more that others. I thank God for my GP who has compassion care and who takes the time to listen. I also thank God for the creator of "Living with Ataxa" where we can come together as a group to discuss; anything that is on our mind or anyone that just want to talk or vent. No matter what the discussion is, we all listen. Anyway, thank you for reading my post and see you the next time a discussion strikes a chord.
I agree with this and see it's a world-wide phenom. I see two neurologists. One dr. rushes me out. I happen to like her but there is not much she can do anyway, and if you are not dying in a wheelchair, goodbye and goodluck is her attitude. I also stick to exercises and rest.I am less vigilant about diet since the main neuro told me "eat anything tasty." Microbiotics didn't work for me plus my "teacher" had cancerand shakey eyes.