ADEM Specialist in UK?

involves demyelination in the spinal cord and in the brain. The demyelination in the brain is different than a demyelinating attack from MS; the lesions are scattered and do not appear in the same pattern as those from an MS attack.

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ADEM Specialist in UK?

Postby nmowbray » Thu Nov 20, 2008 2:09 pm

Does anyone know of an ADEM specialist or Dr with a lot of knowledge/patients with ADEM in the UK. My partner was diagnosed in March and his Neuro has agreed to referring him for a second opinion but says he doesn't know who to?!! Has anyone seen anyone with any knowledge at all?'

Thanks, Nat
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Re: ADEM Specialist in UK?

Postby Selkie » Fri Nov 21, 2008 8:12 am

Dr. Anu Jacob at The Walton Centre in Liverpool would be a good start for info. He has spent time at the Mayo Clinic and is starting new research in the UK re various neurological disorders.I attented a TM meeting in Liverpool where he was guest speaker I was impressed by his knowledge and sympathetic manner. Google The Walton Centre Liverpool for contact details.
daughter Diagnosed June 3rd 2008, sudden onset, 2 hours, quadraplegic, on life support.

Advice needed
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Re: ADEM Specialist in UK?

Postby nmowbray » Fri Nov 21, 2008 11:36 am

Thankyou so much for that, had a look on the website and will pass those details onto the Neurologist. It might be a start?!

Thanks again,

Take care
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Re: ADEM Specialist in UK?

Postby carlzzz » Wed Nov 26, 2008 1:36 pm

Hey hi,

Im from Uk my daughter was treated in a london hospital St Georges by consultant Dr Antonia Clarke she saved my little girl and one of the best in London. St Georges Blackshaw Road Tooting Beck if you would like phone number just message me. I hope this might help? Carlzzz xx
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Re: ADEM Specialist in UK?

Postby ZS1983 » Sun Feb 21, 2010 10:49 am

My neurologist, Dr Stephan Schumacher who has clinics at Bolton Hospital, Salford Royal (Hope) Hospital in Manchester and Breightmet Health Centre in Bolton is a specialist in long term neurological conditions (ADEM and MS being two of his specialisms) and he lectures on the subject at the Universities of Bonn and Berlin. He is the nicest guy you could ever meet and is open and direct about what to expect, what not to worry about, etc and if he refers you to someone for treatment, you seem to get seen quicker - maybe due to his status in terms of how good a neurologist he is?

Hope this helps as I was diagnosed after our first family holiday abroad to Portugal in Oct 2008 and my scans showed damage that Dr Schmacher was straight up about the fact I should never have survived and that at best I should've been in a wheelchair. Within 9 days of returning to the UK, I had full paralysis from the neck down, temporary vision loss (some of which has been permanently lost), pins and needles, the most excruciating headache, balance problems, slurred speech, half my face had drooped, confusion, memory loss, extreme fatigue, delirious visions, I had forgotten how to swallow.. and well, as you can imagine, I was pretty much a vegetable. I could only communicate via blinking. The oral steroids only made me worse. My family was told to start making plans in case the worst should happen (esp as my son wasn't yet 2 yrs old) but all the time, I didn't realise that there was anything wrong with me. Only little bits but it didn't really register with me that I was at death's door. Dr Schumacher gave me hope, support and answers when I was more able to hear them. I truly believe if anyone can help you, this is the guy to see.
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Re: ADEM Specialist in UK?

Postby baopsman » Thu Mar 29, 2012 11:30 am

Somewhat late I know but for future reference.
My son was diagnosed with ADEM by Dr O'Dwyer at Frimley Park Hospital in Frimley, Surrey, He is part of the team at the Atkinson Morley Wing, St. Georges, Tooting. Without his very quick diagnosis and subsequent transfer to St. Georges I'm sure my son wouldn't be making the dramatic recovery that he is currently making.
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Re: ADEM Specialist in UK?

Postby Shirley » Mon Apr 02, 2012 9:03 pm

A big thank you to all that contributed to this thread, I'm sure a lot of people will glean the infomation from this.
Keep well



Shirley

TM since 2003 - 90% recovered
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