My daughter is 17. she has been battling thoracic outlet syndrom for a few years now. she had surgery on her right side inb febuary. shortly befor her surgery she started to have really bad nerve pain and symptoms in her hand. also started turning red and blue and burned. Her neuro surgeon said it was raynaulds and just kind of dismisdsed it…but it hurts. Burns, recently spasms and cold does not seem to bring it on. Interestingly I started her on an aspirin a day when they raynaulds started as I was concerned for a blood clot ( whiich is common in thoracic outlet syndrome) and the symptoms improved. I stopped the aspirin after her surgery and the symptoms have reappeared only worse. Now in both hands and feet. they turn really really red and then toes turn purple and it hurts. Like burns. Sometimes she has trouble walking due to pain. Writing is hard. school is hard. I live in frederick maryland and am looking for a dr to either dx her or rule her out. any suggestions
Your poor daughter, so much to deal with at such a young age.
Aspirin is the first line of defence for a number of us. I was in a really bad place with burning and swelling from EM until in 2012 I planned a 24 hour flight and began taking a 75mg aspirin daily to guard against a DVT on such a very long flight. I was amazed that the flight was not the burning hell I had envisaged and I had a lovely month with family. It was such a huge reduction in the swelling and severity of the flares that I continued taking it, Then in 2014 I broke my leg very badly and following a 5 hour operation my heart was in some way damaged and I had to start on blood thinners and stop the aspirin. Now the EM is back full force. Is your daughter not able to stay on a low dose aspirin?
You will read that when EM responds to aspirin therapy there is a myeloproliferative disease in the offing but I and others have been thoroughly checked out and cleared.
Hi,
I feel sorry for your daughter having to go through this! Sounds like EM and Raynaud’s Phenomenon. The reason the surgeon sounded dismissive, he was just looking for blocked or pinched nerves, they usually have very poor bedside manners…
You might want to seek out a good Neurologist for this, at least they can do a nerve conduction study and check the small fiber nerves too.
Unfortunately there is not much in there tool boxes for this condition, but your daughter will be in my prayers.
Hi Nel and Jon
I am trying to make an appointment today down at hopkins for a neurologist. The good thing about where I live is there are plenty of good hospitals and drs around within a 1-2 hr drive. its a matter of finding the right one. I restarted her on the aspirin today. I just stopped it because at the time i didnt know about EM and just had her on it becasue I was worried about a blood clot. I just found it interesting that it help and with everything that went on between now and then just kind of forgot about it.
I am determined to find her the help she needs. she is young and talented and has her whole life ahead of her. I have to find someone to help. Thannks for your replys and help!
Terri
I have broadcast your doctor request to all members so you should get more replies soon.
Thank you Nel!
Thank you Nel!
I was given this list of doctors for Maryland by mads, a moderator here at Living With Erythromelalgia. They are said to be familiar with EM.
Grant James Anhalt, MD
Johns Hopkins Outpatient Center
601 North Caroline Street
Baltimore, MD 21287
(410)955-‐2992
or
(410)955-‐5933
Clifton O. Bingham III, MD
Rheumatologist
Johns Hopkins Bayview Medical Center Rheumatology
4940 Eastern Avenue,
Suite 1B1
Baltimore, MD 21224
(410)550-‐0100
also at Arthritis Clinic
5200 Eastern Avenue,
Suite 4100
Baltimore, MD 21224
(410)550-‐0578
Hugh G Calkins, MD
Cardiologist
The Johns Hopkins Hospital
600 North Wolfe Street
Carnegie Room 530
Baltimore, MD 21287
(410)955-‐3339
or
(443)997-‐0270
Fax
(410)614-‐1345
also at
Johns Hopkins Outpatient Center
601 North Caroline Street
Baltimore, MD 21287
(410)955-‐7405
or
(443)997-‐0270
Fax
(410)614-‐1345
Clair A. Francomano, MD
(specializing in EDS)
Harvey Institute for Human Genetics
Greater Baltimore Medical Center
6701 North Charles Street,
Suite 2326
Baltimore, MD 21204
(443)849-‐3131
Fax
(443)849-‐2919
Robert Gerwin, MD
Neurologist
(has treated Erythromelalgia with botox)
Pain and Rehabilitation Medicine
4405 East West Highway,
Suite 502
Bethesda, MD 20814
(301)656-‐0220
Fax
(301)654-‐0333
Mary L. Michels, MD
Rheumatologist
9 Old Solomons Island Road,
Suite 104,
Annapolis, MD 21401
(410) 897-‐8485
Michael Streiff, MD
Hematologist
The Johns Hopkins Hospital
600 North Wolfe Street
Hospital Main Entrance
Sheikh Zayed Tower
Baltimore, MD 21287
(410)955-‐2000
or
(410)955-‐3142
Camilo Toro, MD
Clinical Neurologist
National Institutes of Health (NIH)
Building 10-‐CRC,
Room 3-‐5545
10 Center Drive
Bethesda, MD 20814
(301)443-‐5436
Fax
(301)496-‐7157
■■■■■■■■■■■■■■■■■■■
also at
187 Thomas Johnson Drive,
Suite 3
Frederick, MD 21702
(301)631-‐0444
Fax
(301)631-‐0250
Fredrick Wigley, MD
Scleroderma Center
Johns Hopkins Medical Center
4940 Eastern Avenue
Baltimore, MD 21224
(410)550-‐2003
Fax
(410)550-‐1363
I'll add that I'm not sure Dr. Toro practices in Frederick anymore. I've looked him up and I think I saw that he is no longer at the Fredrick address. I included it, just in case, especially since it would be so close to you.
thank you so much for the info. i will work on that today!
I am sorry to hear about your daughter. I started to get symptoms of EM around 17 as well. The doctor (who I really like) that gave me the formal diagnoses for EM is:
http://www.arthritiscarespecialists.com/pb/wp_b5548960/wp_b5548960.html
Melissa Hawkins-Holt, MD (adult & pediatric rheumatology) graduated from University of Maryland Medical School where she also completed her Residency/Fellowship. She is board certified in Internal Medicine, Pediatrics, and Rheumatology. In addition to her private practice, she sees patients at the Pediatric Rheumatology Clinic at University of Maryland and will be taking over as the head of this clinic in 2014.
I can't recommend her enough.
I hope this helps!