I wish I could readily recommend this doctor, but she is really a neurologist who specializes in headaches. However, since I also have EM symptoms in my scalp, my GP recommended her. Thankfully they are willing to treat my symptoms, although not technically a 'headache'. Treating the out-of-control nerves in my scalp also has the benefit of helping the EM symptoms in the soles of my feet. I don't know that the doctor would acknowledge EM as a diagnosis, but she is effectively treating the scalp symptoms. Here is her information:
Clinic: Hartford Headache Center
Telephone: 860-■■■■■■■■
Doctor: Tanya R. Bilchik, MD
I am being treated by: Denise McGrath, MSN, FNP, APRN, BC
Address: 144 Main Street, East Hartford, CT 06118 USA
I am seeing a cardiovascular doctor, just outside of Philadelphia, who specializes in autonomic nervous system function. He diagnosed me with Dysautonomia. He has successfully helped 6 or 7 people with EM, by treating the underlying disorder (Dysautonomia). He also happens to have a wonderful bedside manner!
Dr Ramesh Adiraju, 501 Bath Rd., Bristol PA 19007 (U.S.)
(215) ■■■■■■■■
I guess in reading briefly through the replies, I'm blessed. I will say here, that I struggled to find answers for YEARS. I was the one who first diagnosed myself. I had two GP's I would see at our small town clinics, which are connected to Mayo. In doing my research before seeing both GP's, I came across Dr Mark Davis' name at Mayo. Lucky me, I live less than 3 hrs from Rochester, MN. When I saw either GP, both relied on me to show them the way. I went with one, and he contacted Dr Mark Davis. My referral took 5 months to get in with Dr Davis. He's a very busy man. I was scheduled for 3 straight days of many tests. So, in the end, I was diagnosed by Dr Davis. And I want to add, he's a VERY kind man. So easy to talk to. He's compassionate and patient. And not hard on the eyes, besides he has a enjoyable Irish accent. LOL!! Anyone who can, should get a referral to see Dr Davis. And seriously, just experiencing Mayo in Rochester is crazy amazing. That place is HUGE!! If you're a people watcher, you can get your fill 10 x's over!! LOL!! Hope this helps someone. ;-)
Hi Sherry- I have been thinking about going to Mayo myself, and was wondering if Dr Davis’ treatment is helping you?
Sherry Lynn Schreiber Rudd said:
I guess in reading briefly through the replies, I'm blessed. I will say here, that I struggled to find answers for YEARS. I was the one who first diagnosed myself. I had two GP's I would see at our small town clinics, which are connected to Mayo. In doing my research before seeing both GP's, I came across Dr Mark Davis' name at Mayo. Lucky me, I live less than 3 hrs from Rochester, MN. When I saw either GP, both relied on me to show them the way. I went with one, and he contacted Dr Mark Davis. My referral took 5 months to get in with Dr Davis. He's a very busy man. I was scheduled for 3 straight days of many tests. So, in the end, I was diagnosed by Dr Davis. And I want to add, he's a VERY kind man. So easy to talk to. He's compassionate and patient. And not hard on the eyes, besides he has a enjoyable Irish accent. LOL!! Anyone who can, should get a referral to see Dr Davis. And seriously, just experiencing Mayo in Rochester is crazy amazing. That place is HUGE!! If you're a people watcher, you can get your fill 10 x's over!! LOL!! Hope this helps someone. ;-)
The doctor who diagnosed me is actually a psychiatrist but she also still uses her regular medical degree. She is the former unit chief for inpatient and outpatient Eating Disorders at Columbia-Presbyterian -NY Cornell Hospital in NY. The campus she is at is in Westchester. She just started her own center last November (2013).
That's the sad thing. I saw two neurologists and a Rheumatologist and an Endocrinologist and a Vascular doctor and none of them mentioned EM. I just sent the ED doc the photos and she knew right away. Sad. Her name is Parinda Parikh. I am going to ask her if the reason she knew about EM is because she has seen other ED patients with this disorder or if she is just really smart and remembers her medical training. She is in her 40s I think
Yesterday I visited Dr Michael Lunn, consultant neurologist at the National Hospital for Neurology. I saw him privately at the Queens Square Consulting Rooms. He took a wider approach than anyone I have met so far. Dr David Bennett focusses on primary, Dr Lunn treats all EM. He also looked at the vascular aspect. He thought it possible that I have vasculitis driving the EM as well as or in conjuction with my rheumatoid arthritis. He is doing some nerve conduction studies, and blood tests, and a skin biopsy. He may do a nerve biopsy. This is the first time somebody has done these in 5 years of looking for an answer for EM (everyone has taken bloods of course). If there is vasculitis he proposes using Cyclophosphamide, and I will do a post asking if anyone knows anything about this. It is heavy, heavy apparently (chemotherapy) and I have some concerns about it adversely affecting the EM although clearing up the vasculitis. We shall see. He was pleasant, funny, has a brilliant secretary Jan, and the whole outfit at Queens Square on one visit appears efficient and welcoming. He also prescribed Duloxetine, which I know is a standard treatment but I have never had anything so far apart from Capsaicin, and propanol. so far so good.
Yesterday I visited Dr Michael Lunn, consultant neurologist at the National Hospital for Neurology. I saw him privately at the Queens Square Consulting Rooms. He took a wider approach than anyone I have met so far. Dr David Bennett focusses on primary, Dr Lunn treats all EM. He also looked at the vascular aspect. He thought it possible that I have vasculitis driving the EM as well as or in conjuction with my rheumatoid arthritis. He is doing some nerve conduction studies, and blood tests, and a skin biopsy. He may do a nerve biopsy. This is the first time somebody has done these in 5 years of looking for an answer for EM (everyone has taken bloods of course). If there is vasculitis he proposes using Cyclophosphamide, and I will do a post asking if anyone knows anything about this. It is heavy, heavy apparently (chemotherapy) and I have some concerns about it adversely affecting the EM although clearing up the vasculitis. We shall see. He was pleasant, funny, has a brilliant secretary Jan, and the whole outfit at Queens Square on one visit appears efficient and welcoming. He also prescribed Duloxetine, which I know is a standard treatment but I have never had anything so far apart from Capsaicin, and propanol. so far so good.
wonderful news my friend!!!!!!!!!!. Im thrilled that you have finally met an aware proactive Dr.I know a little about Cyclophosphamide . Briefly, yes it is a chemotherapy drug used to treat different cancers - including breast.(I am in remission from breast cancer), but also widely used for inflammatory arthritic /connective tissue diseases. It is an alkylating cytotoxic and immunosuppressant- commonly termed as an anti rheumatic drug. It suppresses immune system so highest side effect or risk is increased susceptability to infection. Remember, many of us have a low immune system as a matter of course. Also, you may not be steriod responsive . It tends to be low dose tablets not high dose intravenous as given for Cancer- which is probably worrying you. Suppressive therapies in UK: Methotrexate, azathioprine, cyclophosphamide .I have seen methotrexate (an equivalent) work wonders so stay strong.
Attach couple things to get you started. I am happy to chat ;)
I guess early on, as has been my way as far back as I can remember, I am VERY sensitive to pharmaceuticals. I pretty much always have some kind of side effect. So I don't take anything. I continue to look for natural ways to deal with this, as we all know, as of right now, there's no cure. So, knowing this, he prescribed 2 things for me. One was a lidoderm patch and something that breaks the blood brain barrier. I can't even remember what it was. I refused to deal with the pill. The patch was ridiculous. I move my feet too much in the night. They would not stay on my feet.
I just keep my feet as cool as possible. Otherwise, when it gets really bad, I put cool towels on them till they calm down. So, I keep away from things that aggravate them for the most part. Or, I just deal. Maybe one day it will be beyond what I can bear, and I'll have to do something. But until then, that's where I am at.
I do know, he'll try varying things with his patient, if the patient wants to be patient to try it all.
Sorry I couldn't help.
Rachel said:
Hi Sherry- I have been thinking about going to Mayo myself, and was wondering if Dr Davis' treatment is helping you?
Sherry Lynn Schreiber Rudd said:
I guess in reading briefly through the replies, I'm blessed. I will say here, that I struggled to find answers for YEARS. I was the one who first diagnosed myself. I had two GP's I would see at our small town clinics, which are connected to Mayo. In doing my research before seeing both GP's, I came across Dr Mark Davis' name at Mayo. Lucky me, I live less than 3 hrs from Rochester, MN. When I saw either GP, both relied on me to show them the way. I went with one, and he contacted Dr Mark Davis. My referral took 5 months to get in with Dr Davis. He's a very busy man. I was scheduled for 3 straight days of many tests. So, in the end, I was diagnosed by Dr Davis. And I want to add, he's a VERY kind man. So easy to talk to. He's compassionate and patient. And not hard on the eyes, besides he has a enjoyable Irish accent. LOL!! Anyone who can, should get a referral to see Dr Davis. And seriously, just experiencing Mayo in Rochester is crazy amazing. That place is HUGE!! If you're a people watcher, you can get your fill 10 x's over!! LOL!! Hope this helps someone. ;-)
My EM was diagnosed by Dr. Nicole Chiappetta, a specialist in autoimmune disorders and bone and joint disorders. She's at Coordinated Health in Bethlehem/Allentown, Pennsylvania.(I was seeing her for possible osteopenia and was fortunate that she knows about EM.)
I was diagnosed by a Kaiser Permenente Internest named: Dr. Brian Hertz. He is at Terra Linda, California. U.S.A. He has been treating me for about 7 years.
Like many members I really diagnosed myself. That was after about four years and the help of the internet. I then saw my dermatologist (Dr Hilary A Carman, Hyde Park, Sandton, Gauteng, South Africa) confirmed my diagnosis. She had thought of EM as a possibility, though, when my symptoms first started (it was listed in her notes).
Just wanted to share my information with you. I was diagnosed by Dr. Yolanda Rosi Helfrich at The University of Michigan Dermatology Clinic located at the Taubman Center. This is in Ann Arbor Michigan.
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...