Please let me know names of doctors treating yo... - AMN EASIER

AMN EASIER

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Please let me know names of doctors treating you in the U.K.

COwithAMN profile image
COwithAMNAdministrator

I have had a request from a scientist, Dr Nathalie Cartier of Inserm in France (english.inserm.fr/ ). In the UK, we know Dr Cartier very well as she has helped us in the past by visiting when we have had our AMN Patient days. Dr Cartier is a leading researcher into potential treatments and therapies for AMN and ALD.

Nathalie wants to know the names of Doctors in the UK who take care of patients with AMN. I know two Doctors from University College Hospital (UCH) in London but that’s all.

Could U.K. members you please post the name of your Doctor and the Hospital you see him/her at please? Alternatively, let me know their names through the messaging facility here. I imagine Nathalie wants to be in touch with them concerning her latest research.

Thank you,

Chris

18 Replies

Hi Chris,

Myself and my mother have AMN meetings with Prof. Chinnery and / or Doctor Ramnesh (he specialiases in kids and has spoken to my daughter) every other year at Newcastle RVI. I've told them about the various things I've tried, cobratoxin etc. :-)

I also see Doctor Ball every year re: my adrenal glands.

Cheers Keith

Hi Chris

Dr Kevin Talbot & Dr Martin Turner at John Radcliffe Hospital Oxford.

in reply to Cherie

are you local to oxford?

Cherie profile image
Cherie in reply to

No,I live about 55 minutes away near Ascot and a friend, who is also a female carrier, lives near Aylesbury. We both go to John Radcliffe rather than travelling to London.I believe Dr Talbot has 3 carrier patients although he is also learning about AMN. Does your partner go to John Radcliffe?

in reply to Cherie

I live in aylesbury, my partner had his first appointment with Dr lachmann at the national hospital for neurology and neurosurgery in London yesterday. Might be easier and cheaper to be treated in oxford though.

Cherie profile image
Cherie in reply to

I think it would be a good idea to stay with Dr Lachmann if you can as they seem to know more about the condition in London especially concerning males. How did it go yesterday?

in reply to Cherie

To be honest we didn't find out anymore than we had researched on the internet. He's got to have another Mri and a short synatchen test but that's being done at stoke mandeville hospital just waiting for those appointments. My partner had to have more blood tests yesterday though one of which being a genetics test as he has siblings.

Hi Chris

My diagnosis came from seeing Prof. Pamela Shaw at the Royal Hallamshire Hospital in Sheffield. She also referred me to Dr Godfrey Gillett, Consultant Chemical Pathologist at the Northern General Hospital in Sheffield. He specialises in adult inherited metabolic disease and has taken an interest in AMN (unfortunately I have not yet seen him due to my move up to Scotland).

My present neurologist is Dr Dolezal at the Dumfries Royal Infirmary.

Hi, I see a Neurologist in Cardiff but he has little knowledge of the disease, the best Dr around is Dr Colin Steward in Bristol Children's Hospital.

Thanks

Steve

Hi Chris

I see DR R LACHMAN at THE NATIONAL HOSPITAL for NEUROLOGY QUEENS SQUARE LONDON

GeoffMahy profile image
GeoffMahyVolunteer

Hi Chris,

My GP here in Guermsey would be the first to admit he knows very little about AMN other than what I have told him. I therefore rely on seeing Dr Robin Lachmann at the National Hospital.

Geoff

COwithAMN profile image
COwithAMNAdministrator

Hi everyone

Thanks for these names. I will send them to Nathalie.

Don't stop - if other names appear, I will continue to forward on.

Best wishes

Chris

I see Charles Hillier at Poole Hospital he is a Neurologist who also see's my brother,

Hi Chris, do you know a neurologist called Scott Clarke at all? Prof. Aubourg gave me his name the other day and apparently he's well versed in all things AMN.

COwithAMN profile image
COwithAMNAdministrator in reply to Nicolas

Hi Nicolas

No, that's not a name I am familiar with. Maybe Aubourg can tell us more?

Chris

Will do, he may have got the name wrong.

I see Professor Scolding at Frenchay Hospital, Bristol. Believe I'm his Only ALD patient. My sons see Dr Colin Steward at Bristol Children's Hospital. He is extremely knowledge and wonderful!!

robaier profile image
robaier in reply to deirdrecorr

Colin Steward is Treating my daughter and is one of the nicest most humble knowledgable humans on the planet

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