YOUR EM COMMUNITY NEEDS YOU! Dr Database: What is the the name of the Dr/specialist who diagnosed your EM and/or treating you?

Hi Guys,

I know there is a category for recommended Dr/Specialists for Em'ers but frankly it seems lost . We all desperately need to know how to find EM aware /proactive medics . We are, therefore, compiling a comprehensive international list, which will then be made available to all LivingWithEM members.

Could I ask that you please use this post to share the name of the Dr that diagnosed you and/or who treats you. We need the basic details Dr's name, hospital/clinic, address, phone number (if possible), and of course country ;)

Rest assured, all shares are strictly confidential. No personal details such as your name etc... are required. However, should you prefer to offer this information in private , please feel free to message my inbox, or the inbox of any of the mod team

Remember : by sharing you will be helping other sufferers in your area who may be struggling to find help!

Taking time to share is extremely generous . For that ,the mod team thank you

God bless

mads

I recommend,

Dr M J Hudspith. Bowthorpe Pain Management Centre. Norwich. Norfolk. UK.

Heres another recommended

Dr. Erica T. Goode Hayes Street, Suite 505 San Francisco CA USA

Hey Guys,

Many of us have been diagnosed in here. Can we please share the information and help others less fortunate access an EM aware Dr/Specialist .We all know that getting that diagnosis - let alone trialing treatments is a massive obstacle. I am , as i said,compiling a list. If we dont help and support each other who will? If anyone wishes to help me collate this - gratefully welcomed.

God bless

mads

Professor Philp Thompson (neurologist) and Dr Martin Robinson (neurologist). Adelaide South Australia

Hi Mads thanks so much for undertaking this summary - it is sorely needed as I have spent years in the UK trying to find someone to treat my EM

First diagnosed by Prof Walter Greaves, as semi-retired dermatologist, operates out of the St Johns Hospital for Skin diseases, and also privately in New Cavendish Street. Very knowledgeable, kindly but not sure working with the latest meds and reluctant to go out on a limb. Can no longer get to see him anyway.

Also diagnosed by Dr D'Cruz at the London Lupus Centre, who was also empathic but did not treat as I was under another rheumatologist at the time

Now with Dr David Bennett, at the John Radcliffe in Oxford. He really only specialises in primary EM and the genetic test showed I did not have that mutation. He referred me to Dr Chris Denton at the Royal Free Hospital in Hampstead, who then would not treat me because I don't have Raynauds or Scleroderma. My GP by then very frustrated writing 13 referrals and we asked Drs Bennett and Denton between them to come up with something and Dr Bennett has taken me on. He does offer Mexilitene to those with primary EM 'because there is a logic to it' but he has a 'policy' of not giving it outside of primary EM. He has prescribed Lidocaine patches and Pregabalin, but I think he said he is really only focussing on the pain management side

I will book an appointment with Dr Michael Lunn at the Queens square consulting rooms (all consultants from the National Hospital of Neurological ...., also in Queens Square). Some of the doctors at the NHNN are beginning to use mexilitene it seems.

Hope that helps Mads. Looking forward to seeing everyone's responses.

Good luck and thanks again

ajh

The initial diagnosis was made by me; I did a lot of research online and my symptoms fit erythromelalgia. My rheumatologist concurred with my diagnosis; he had already dx me with Raynaud's syndrome, another neurovascular condition that is sort of the opposite of EM in that your affected parts feel cold and turn purple or blue. Severe Raynaud's can lead to amputation of toes or fingers. EM and Raynaud's can go hand-in-hand, and they certainly do in my case.

My Lyme disease specialist (LLMD = Lyme Literate physician) also agreed that I have EM; he told me that many of his patients with Lyme disease develop EM.

I was referred to a dermatologist for treatment, who was also familiar with EM.

The rheumatologist was Dr Stuart Silverman in Beverly Hills, CA, USA

The LLMD was Dr Steven Harris, Redwood City, CA, USA

The dermatologist was Dr James Kunkel, Arroyo Grande, CA, USA

I no longer see any of these doctors since I now live in Idaho. I find that the doctors here are less familiar with EM.

Dr. Maithily A. Nandedkar

1801 Robert Fulton Drive, Site 520, Reston, VA. 20191, USA

Tel. 703-■■■■■■■■

(from Domina)

Thanks guys. Ask people on your friends list to send me or post names.

God bless

mads

After seeing neurologists with no results I was finally diagnosed by

Dr. David Taubin, Director of Pain Management, University of Washington, Seattle, Washington.

Thanks for doing this, I am sure many will appreciate your effort as the first step in getting diagnosed is the most difficult and frustrating aspect of this disorder. It's painful and awful but somehow easier to deal with once you know what you have. My doctor is older with lots of experience so he had seen it and had treated others over the years with it. (not many but some so he knew what it was). I confirmed his diagnosis by having a "flare" in his office.

I am hoping to find other doc's in my area once your results are in.

Thanks Norahs for your share. Directory will all be made available to members on database here at living with LW EM.

I have these names available now Norahs. Let me know how you get on

Heidi Rendall Mukilteo Washington USA
Arthur Ginsberg Seattle Washington USA
Astrid Pujari Seattle Washington USA
Thomas Yang Seattle Washington USA
Scott Carlson Spokane Washington USA
Robert E. Ettlinger Tacoma Washington USA 253- ■■■■■■■■ 1905 S. Cedar St.

God bless

mads

I recommend dr valentine at same hospital as you Mads. Also dr Bennett in Oxford (not sure of hospital name because I saw him when he worked in kings in London



mads said:

I recommend,

Dr M J Hudspith. Bowthorpe Pain Management Centre. Norwich. Norfolk. UK.

Thanks Laura. (((laura))))))))))) x

My doctor who diagnosed me after 17 years of symptoms is Dr. Scott Walsh, Dermatologist M1-700 Sunnybrook Health Sciences Centre, University of Toronto Clinic, 2075 Bayview Ave., Toronto, Ontario M4N 3M5 Canada 416-■■■■■■■■.

www.sunnybrook.ca

hope this helps...

I have also been treated by someone at the Sunnybrook Dermatology clinic in Toronto, Canada and believe that most doctors in the clinic are familiar with EM. The doctor who treated me was Dr. Alhusayen (unsure of spelling).

Bingolover66 said:

My doctor who diagnosed me after 17 years of symptoms is Dr. Scott Walsh, Dermatologist M1-700 Sunnybrook Health Sciences Centre, University of Toronto Clinic, 2075 Bayview Ave., Toronto, Ontario M4N 3M5 Canada 416-■■■■■■■■.

www.sunnybrook.ca

hope this helps...

Yes, I must say that the first person who was very close to the diagnosis in my husband's condition was a young physio in Joondalup Hospital, Perth, Western Australia, just after the first symptoms occurred (after a hip replacement op). He thought it was a complex regional pain syndrome, a condition quite similar. So there are people who at least are aware about rare and unusual conditions. However, my husband went undiagnosed for another 3 years. The general practitioner treated him like a hypochondriac but send him to a vascular surgeon, who said "exercise you are fine". After we changed the practice Dr Lawrence Wapnah at Seacrest Med Centre, Sorrento diagnosed it on the first visit.

Just came accross a few ABC programs (from Australia). The specialist who is interested is Prof. Micheal Cousins.

http://www.abc.net.au/catalyst/stories/2621515.htm

http://www.kolling.usyd.edu.au/research/pain-management-group/mjcous.php

Colorado Arthritis Center Dr. Robert Spencer, Rheumatologist - He specializes in autoimune disorders. Englewood, Colorado USA

Hi, I'm new in this site and Me and my 2 sons an a daughter both have EM, does anyone knows about a Dr. in Orlando, Florida who can treat my kids, they're 10 and 11 years and a daughter of 21.I can't find a Dr. who can treat them. I really appreciate if anyone can know about a Dr. in florida for me and my kids.



mads said:

Thanks Norahs for your share. Directory will all be made available to members on database here at living with LW EM.

I have these names available now Norahs. Let me know how you get on

Heidi Rendall Mukilteo Washington USA
Arthur Ginsberg Seattle Washington USA
Astrid Pujari Seattle Washington USA
Thomas Yang Seattle Washington USA
Scott Carlson Spokane Washington USA
Robert E. Ettlinger Tacoma Washington USA 253- ■■■■■■■■ 1905 S. Cedar St.

God bless

mads

I diagnosed myself after googling my symptoms but had it confirmed by my rheumatologist Dr Margaret Mazur. Her address is :Perth Specialist Centre, Monash Avenue Nedlands Western Australia. Dr Mazur is also treating a few other patients with EM so she has some experience and knowledge of the condition.

Dr Anne Louise Oaklander- Boston, MA

Neurology Associates
15 Parkman Street
Boston, MA 02114-3117

Phone: 855-■■■■■■■■
Phone 2: 617-■■■■■■■■