Where should I start and what specialist can should u see?? I’m from Indiana and have been suffering the red, hot, burning, heavy, tired feet/hands since I was 13… thought it was just a vein problem but now that I’m older I know it’s not normal and want answers… I’m about 95% sure I have EM… primary or secondary I know not… I’m pretty healthy and my only other complications are joint problems…
Hi there Natalie. Welcome to the discussion forum.Some things you can do ASAP are:
1. If you look through the posts there is one that says. Information for new members. I have put a lot of information for you to download on there about treatments, symptoms etc.
2 Join TEA. The Erythromelalgia association. Its a website with a wealth of information , newletters etc..
http://www.erythromelalgia.org/
3. XENON research study. Click on the link and fill in questionnaire. You will then be contacted if you fulfill research criteria
http://www.xenon-pharma.com/em-study/.
4 read the posts on this site, ask questions, share your feelings and make incredible friends who will support and help you.
5. Give me your area and surrounding areas that you could travel to, and ill see if we have any Dr's listed for your area.
So thats a lot to start off with right lol!
You are not alone Natalie. So glad you have found Bens Friends
God bless
mads
Hello and welcome. I would start with a rheumatologist (since you have joint swelling). This condition is often a symptom of another disease. I was personally diagnosed by a neurologist but had seen multiple specialists without an answer before diagnosis. I would go to a specialist at a large teaching hospital (if you have one near you) and bring some articles on erythromelalgia with you (rare so many have not heard of it). There is a list of referrals that they have been collecting on this website. Look to see if someone is local to you. I have also had symptoms since I was a teen and I was sure my genetic testing would be positive but was shocked that mine was negative. Getting a diagnosis can be long and frustrating! Good luck and message if you need anything!
Hi Natalie and Welcome,
All I can add to the excellent advice already on the discussion is not to omit to take photos with you when you do get to see a doctor, real printed out photos as doctors often can’t be bothered to look at phones or even iPads and even if they do the evidence is not there on file. I was once being told facial flares were too rare to be possible and whipped out a photo of my nose in full flare and his face was a picture in itself. My foot flare photos were instrumental in getting my diagnosis confirmed by a doubting rheumatologist. The original diagnosis by a neurologist came about by my feet and hands obligingly flaring to order in his hot office but you can never be sure that will happen.
Good luck
Nel
Hi Natalie, I agree with Nel … Without the photos I don’t think I would have been diagnosed as quickly. I showed my physical therapist the photos and he was the one who brought up the possibility of EM which my doctor concurred with. I’m on a daily low dose of aspirin and misoprostol, which helps symptoms a little bit. Good luck.
Agree that photos are the best thing you can do to help with a diagnosis. Also, I always made the mistake of making early morning appointments because I know doctors office get off schedule and didn't want to wait. That wasn't the best because my hands and feet are the coolest in the morning. Figure out when you are at your worst during the day and make the appt. at that time. If you are in a flare when they see you, it helps because they can feel the heat coming from your feet/hands and actually get a little more understanding than even the pictures can convey.
Hi Natalie. You have already heard any decent advice I would of come up with and all good at that.
With the joint pain I would defiantly see a rheumatologist all though there are some of us that have joint pain with no known cause at this point even after Rheumatoid tests. Do you also have problems with cold? white / blue fingers or toes?
Just curious. I am trying to see if there is any correlation to those with EM and Raynaud's are more prone to joint pain that is not caused by heat.
Take care,
Alina
Tizzy, we always had physiotherapists until they began arriving in tanned droves from Australia, New Zealand and South Africa. Now they are physios and mine is Australian.
My daughter has me in fits with some of the Aussie slang. Speechees indeed!