Good medicos and therapists

[georger]

Long, long ago in the land of Cadfael, before he established this forum, Craig suggested an exchange of info on useful experts. These experts must be very rare. Anyway here are a few:

Professor Edward Byrne, neurologist, now in London, takes you seriously, doesn't think you are nuts, was the only one to say "I know exactly what you mean" when I described my symptoms. Diagnosed TAM when all others failed. Has an academic post so am not sure if he still sees patients.

Tori Wilckens and Anne Buchan, neuro physiotherapists in South Australia would never ever make that statement that you hear so often "There is no treatment".

Dr Roy Lee, a highly experienced and gifted rehabilitation specialist, last heard of in Singapore.

Mary Lynch-Ellerington, one of the best neuro physiotherapists in the known universe. Based in York, UK but travels all over the world tutoring other physios. Probably hard to get to see but she would recommend another physio.

So what if you are not in the UK, Singapore or Australia? Well, let's hear from you, there must be other useful experts out there or have I just been lucky?

George

[Bruce99]

I guess that any list of good medicos presupposes that there are some to avoid out there. One is Chiron Bartholomeusz. Dismissive and lacking in any ideas about anything he has not seen before and of no use with anything out of the ordinary. Avoid, avoid, avoid.

[Craig Lane]

I have to add Dr Ffion Thomas and Dr R.J.Walters in S.Wales.( Not the new one ). Dr Thomas left no stone unturned until she had a diagnosis and Dr Walters has given unerring support. I'm sure they will both be happy to read their names here when they visit our site.
I have to add another here That of Dr Hilary Archer a geneticist from our corner of the globe. Well onboard with the research and always watching for groups targeting rare disorder research.

[georger]

This is an illustration of the difficulty of finding a good doctor. My GP carries the burden of my TAM by himself, so decided to send me to a professor of neurology. The good prof declined and referred me to another neurologist who told me that he is the only neuro doing muscle biopsies in this state. (10 years ago I had to go interstate for biopsy and diagnosis.) Despite having the referral faxed to him, this neuro hadn't read much on TAM. He said he'd do some research and make a further appointment. I haven't heard from him and have reminded him once. He's just hoping I'll go away and I will because he's got nothing to offer. So it goes.

[georger]

The story continued... To be fair, I did get an appointment with the neurologist out of the blue, quite some time later. He doesn't know much about TAM but is interested and it's worth talking to him, so I will see him again.

[Craig Lane]

Watching this space.