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

Symptoms and Treatments Recommend a Doctor, Therapist, or Clinic (Positive
61

Dear jessa24,

So pleased to see you and thank you for posting.

Big hug for the Dr's name- we really appreciate you taking the time to share.

Great minds think alike ;) , as we do have a link for Dr list on the membership . When joining LWE , EM'ers have a doctor recommendation question in the profile section . However, Dr names are not being generated too well, thats why we ask new members and pin it as discussion topic in forum .

The database is slowly building but I would welcome any other ideas you might have that may help. Maybe we could have a chat - brainstorm together .

God bless

mads x

62

The North Carolina, USA, doctor who diagnosed me is Dr Jill Vargo. Here's the contact info:

Asheville Arthritis and Osteoporosis Center

15 Turtle Creek Dr, Asheville, NC 28803

(828) ■■■■■■■■

63

Jessa, has Dr Jorizzo been able to help you? Or are you still in the trial-and-error process?

I'd really appreciate an update before I transfer from my family practice doctor, who will prescribe just about anything I research and provide a URL for, to Dr Jorizzo. It would be great to have a doctor who would give direction instead of respond to requests, but only if he's actually having success in finding a treatment to fit the individual. I already have a diagnosis from a rheumatologist, so I don't need a dx, but I do need help.

Thanks,

Ane

jessa24 said:

Hi Mads,

Thank you for all the support you give. I went to see a doctor you recommended but gave the info again below. I was wondering if it would be possible to just ask administrators to add a link for the doctor list. It seems to be the most common question asked and hard to find in the discussions when you first come to the site. Maybe if it were more available you wouldn't have to give it to each new person? Just a thought...

Dr. Joseph Jorizz

1305 York Avenue

9th Floor

New York, NY 10021

Phone 646-962-9253

Fax (646) 962-0033

64

the doctor who diagnosed me was my pain management doctor. I was put in hospital for cellulitis and he happened to be the pain management doctor on call. He diagnosed me while I was in the hospital and he became my doctor. He is the best thing (besides my husband :) ) that has ever happened to me. His name is Dr. Barry F. Bass, M.D., Pain Medicine, 18220 Texas 249, Suite 330, Houston, TX 77070 281-■■■■■■■■. Also Has anyone tried Gralise? I tried it for a week and if it wasn't for the side effects I got, I would have stayed on it and called it a miracle pill. I felt no pain in my feet at all. But I got super sleepy all the time on one pill and started to swell up and gain weight, so it was a no go for me but it might work for one of you out there.

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65

Hi Julie,

Gabapentin or pregabalin(Neurotonin/Lyrica), is usually given for neuropathic pain syndromes, and weight gain , 'drunk' feeling, and sedative side effects are unfortunately the norm. If tritated up slowly these effects can be minimised and they do stabilise - with time. Gaba has varying degrees of success amongst EM'ers, but for diabetic neuropathy it works wonders! . Its such a shame you couldnt tolerate it. Pregabalin has less side effects- dont know if you have tried this too . Personally, neither have ever helped my EM, however, I find they do help sleeping.

Thank you so much for sharing your Dr details Julie. Your generosity will help many fellow EM'ers struggling for a diagnosis in the TX Houston area.

God bless

mads x

66

Please can we keep sharing Dr names Guys.

Thanks

x

67

Hi all:

Sorry for not posting for a while, but I've been busy trying to research this, seeing doctors and, and researching treatment options.. I also have a doctor to add to the list of "knows his stuff with EM" and would like to add him.. His name is Dr. David Goodenough, and he's located at 394 Bar Harbor Road, Trenton, Maine.. 207-■■■■■■■■.. Very knowledgeable, and supportive of his patients..

68

UPDATE:

Our Dr database is growing but we desperately need all members to share their Dr's details with us . You can either post in this thread or inbox Nel, Alina or Myself privately.

Your generosity will help fellow EM'ers access a Dr sooner rather than later.

Please remember , we all struggle. Most of us will have consulted , on average, 5 different specialists before being prescribed firstline treatments to try!!!!!!!!!!!

We are working tirelessly to raise awareness, provide information and offer support.

YOUR EM COMMUNITY NEEDS YOU :)

Thank you.

69

Thanks LizB

Mount Siani Medical Center in NYC with Dr. Daniella Kadian-Dodov.

70

My daughter and I were diagnosed by Dr. Mark Davis at Mayo in Rochester. He didn't treat us, but referred us to the genetics department of Mayo and that is where my three other children were diagnosed. The neuro-geneticist is Ralitza Gavrilova and she is at Mayo in Rochester. She would only deal with inherited EM. I live too far away for us to get treatment from the Mayo Clinic and go back and forth...I quickly ran out of money and had to stop going. We try to educate rheumatologists and family practice doctors where we live now and can't say that we have found anyone who understands it. If I do I will come back and put him or her on the list.

71

Hi All!!

Can't remember mads IF I gave you the new information for Dr. English?? ... He is Dermatologist in Pittsburgh, PA that diagnosed me in the Spring with EM. I think my memory is affected here as well ; ) LOL!!! Anyway hope this contact information is helpful to whomever may need it...

Dr. Joseph C. English

9000 Brooktree Road

Suite 200

Wexford, PA 150908

724-933-1320

: ) Mim

72

Thanks Guys,

We are struggling to get directory together. Taking time because of health and because not everyone shares their diagnosing/treating Dr details. Welcome help to get those names flooding in .

Vera. Is the Dr Faber 'Lacosamide' study started yet? Been told still not recruiting???????

Directory will be available as soon as we can. Meanwhile, names thus far available from myself, Nel and Alina :-)

73

Hi everyone

I mentioned that I had seen Dr Michael Lunn at the Queens Square Consulting Rooms. He was convinced my 'EM' was vasculitis. Now here's a thing: I have had 3 skin biopsies, and numerous blood tests for cryoglobulins - all negative for vasculitis. So for 5 yrs everyone - including Dr Chris Denton at the Royal Free,- has all thought it was secondary EM. Dr Lunn persisted, and because there was no potential in my sural nerves i.e. they weren't functioning properly, I have a sural nerve biopsy performed by Ms Huma Sethi. She had been asked to take out a significant amount of nerve as it is easy to miss with only a tiny sample. Lo behold - I had florid vasculitis on this nerve. So now the diagnosis is vasculitis and I have embarked on cyclophosphamide and prednisolone infusions - cyclophosphamide every 3 weeks for 10 sessions i.e up until May 2015. Dr Lunn and Dr Bennett apparently believe that cryoglobulins are often difficult to detect and labs can fail to collect the blood properly. I have also had low ESR and CRP throughout this period of vasculitis-testing, whereas most on-line information say vasculitis is associated with high inflammatory markers. I have only gone into this in some detail as I wonder how many others have a missed vasculitis diagnosis. it was only the persistence of Dr Michael Lunn which winkled this out. I do think Dr Lunn works with a very wide knowledge of associated illnesses. He is a consultant neurologist but seems to have greater breadth than some.

I will keep you posted on how the treatment works.

best wishes to all

ajh

74

Dr. Amahl Mehta rheumotologist
Southland arthritis, temecula ca
(951) ■■■■■■■■

He has 1 other patient with EM

75

Hi,
Sorry for this never ending post. I was having trouble finding docs who were familiar or had worked with EM in CA on this site so I emailed the TEA. This is the list of doctors they provided me with and I thought I'd share in case it could help someone else but I couldn't think of another way to do it!

Dr Apollo, Richard, Acupuncture
Five Element Expert
61 Camino Alto
Mill Valley, CA 94941
(415) 388-­‐5170

Dr Baumgartl,William,Pain Management
20055 Lake Chabot Road, Suite 350
Castro Valley, CA 94546
(510) 693-­‐7246 Fax (209)956-­‐7733
also at 3903 Lone Tree Way
Antioch, CA 94509
(510) 693-­‐7246 Fax (209) 693-­‐7246

Dr Chandra,Satis, Internal Medicine Geriatrics
Dominican Medical Foundation
1595q Soquel Drive,Suite 400
Santa Cruz, CA 95065
(831) 475-­‐1111 also at 1820 41st Avenue, Suite D Capitola,CA 95010
(831) 476-­‐3000
and 2018 Mission Street Westside

Santa Cruz, CA 95060 (831) 706-­‐2220


Dr Cohen, Jay, Psychiatrist, Erythromelalgia
1337 Camino Del Mar, Suite C
Del Mar, CA 92014
(858) 345-­‐1760


Dr Douglas, Vanja C, Neurohospitalist
University of California San Francisco Medical Center
505 Parnassus Avenue, Suite M798
San Francisco, CA 94143
(415) 476-­‐1489 Fax (415) 476-­‐3428
■■■■■■■■■■■■■■■■■■■■■■


Dr Franklin, Nancy E, Dermatologist
Kaiser Permanente Dermatology
370 Lennon Lane
Walnut Creek,CA 94598
(925) 817-­‐5600

Dr Goode, Erica T, Internist
2250 Hayes Street, Suite 505
San Francisco, CA 94117

(415) 668-­‐6767 Fax (415) 668-­‐8248

Dr Hines, Robert, Pain Management
Bay Area Pain Medical Associates
3 Harbor Drive, Suite 115
Sausalito, CA 94965
(415) 380-­‐0480 Fax (415) 380-­‐8788

Dr Kunkel, James, Dermatologist
880
North
Oak
Park
Boulevard
Arroyo
Grande,
CA
93420
(805)
474-­‐9550
Laine,
Wilfred,
DPM
Podiatry
101
Welch
Road
Palo
Alto,
CA
94304
(650)
324-­‐2091
Fax
(650)
324-­‐4404


Dr Leeper,
Nicholas
James,

Vascular
Medicine
and
Cardiology
Department
of
Vascular
Surgery
MC
5642
Stanford
University
Medical
Center
300
Pasteur
Drive
H3638
Stanford,
CA
94305
(650)
724-­‐8475
Fax
(650)
498-­‐6044




Dr Poncelet,
Ann,

Neurologist
Neuropathy
Center
400
Parnassus
Avenue,
8th
Floor
San
Francisco,
CA
94143
(415)
353-­‐2273
Fax
(415)
353-­‐2898


Dr Prager, Joshua P,
Anesthesiology
California
Pain
Medicine
Center:
(310)
882-­‐7005
100
UCLA
Medical
Plaza,
Suite
760
Los
Angeles,
CA
90095
(310)
264-­‐7246xFax


Robbins, Wendye, MD Anesthesiology and Pain Medicine
Stanford University Pain Management Center
450 Broadway Street, Pavilion A, 1st Floor
Redwood city CA 94063
(650) 723-­‐6238 Fax (650)721-­‐3417

Stricker, Raphael, MD
Lyme Specialist, Internist, Hematologist, Immunologist
Union Square Medical Associates
450 Sutter Street, Suite 1504
San Francisco, CA 94108
(415) 399-­‐1035

76

I recommend the following neurologist. He did his residency at Mayo Clinic in Rochester and diagnosed my EM on my third visit.

Dr. Steven Kosa
Meritas Health Neurology, Suite 500, North Kansas City Hospital
North Kansas City‎ MO‎ 64116
United States
Tel. (816) ■■■■■■■■
Fax (816) ■■■■■■■■

Beth L

77

Dr. Anthony Alario -- UMASS, Worcester, MA

78

Dr. Albert from Dartmouth NH

79

Doctor in France that diagnosed me:

Dr. Veronique DACHER

Chamallieres,

France, 63400

well worth the 2 month wait for new patients, this lady is very generous with her time and efforts. Cost is 35$ as per french rates.

80

Dr. Lauren Phillips
Dr. Vernino
UT Southwest
Dallas, Texas

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