Finally officially diagnosed!

General
1

So, I drove 5 1/2 hours to Indianapolis to see Dr. John Kincaid at UI Neurosciences and I’m so thankful that you guys recommended him. He was awesome. By the time I actually got to see him I was in full flare. He hadn’t taken two steps into the room and said “You have EM”. As much as it’s not something you want to have, it’s just such a relief to have someone actually acknowledge there really is something wrong with you. He proceeded to have a good 1/2 hour conversation with me and my husband. It was enlightening too. I thought I was primary because I’ve had it all my life but he says it’s secondary to my AS (Ankylosing Spondylitis) My AS onset at about 18, I’m now 50. He said it’s his first case of EM he’s seen with AS but AS is a rheumatological and autoimmune condition so there is no reason I couldn’t have EM with it.

Mine goes about half way up my calf and he seemed to think it wouldn’t spread above that which is a relief. I really feel for those of you that can’t wear pants although, I’m always rolling mine up so they don’t touch my feet or lower leg.

I haven’t actually started any new treatment yet because he wants to check on how much gabapentin I was taking in the past but hopefully he can find something that will help. I take Salsalate (aspirin based anti-inflammatory) Tylenol 3s for pain both for EM & AS, some diuretics (for HPB but also help with swelling) all seem to help just a little bit with the EM but only when I’m not full flare, which only happens (full flare) anytime I want to actually do anything or at night or when it’s warm, etc… He also told me not to be so concerned about soaking my feet in water. It’s not that I never do but I really try and limit it because I’ve heard the horror stories and it really dries my feet out. Dr. Kincaid said I also need to find a good Rheumy because the better my AS is treated, the better my EM will be. An probably a Dermatologist to help with the treatment of my skin (It’s pretty rough, dry and thickened from the EM). Dr. Kincaid also said his annual convention on EM is coming up in a few weeks. He was putting together a speech for it and was also hoping some new forms of treatment might come out of it. Here’s hoping.

I had seen the same Rheumatologist for 30 years but he retired last year. I’ve seen two local Rheumatologist since, both sucked. Gave me 15 minutes but they never wanted to hear anything from me. Neither would talk about EM (had never heard of it and it had nothing to do with Rheumatology according to them) and neither wanted to talk about better treatment options for my AS either.

So I need to start a new search for a Rheumatologist (a good one) and a Dermatologist that is either familiar with EM or is willing to use it as a learning experience. I don’t care if I have to travel like I did to Indy, although Dr. Kincaid, long term, would like me to find someone closer to home to help me with my EM. Anyone know a good Rheumy or Dermatologist in Michigan? Preferably someone that is familiar with EM? or not only willing but wants to learn?

3 Likes
2

Good for you! It’s so important to advocate for yourself. I’m glad you were able to finally get closure with respect to a diagnosis. I had read some of your previous posts and know it was a long time coming for you. Hopefully this doctor is able to find a successful treatment option for you, as well.

It’s also good to hear there are medical professionals out there researching EM.

2 Likes
3

Great that you have a diagnosis at long last.

I hope also that you manage to find a rheumatologist and dermatologist who knows about EM.

I don’t know if you are aware one of our members has recently done a video which is brilliant and she is hoping it makes more people aware of EM and get research done on it.

4

I’m in MI also - I don’t have any recommendations for a rheumy or dermatologist, but I have been seeing Dr Green at the U of M Back/Pain Management Clinic (she sees patients in Ann Arbor & Northville). She has been tremendously helpful in getting my issues under control. Still not positive that I have EM, but I do now think that at least some of the issues I’m having are also from back issues. She has been very good about trying to tramway symptoms and making referrals to other specialists to try and get things going toward helping.

5

I am glad you got diagnosed! When I finally got diagnosed my stress level decreased a lot. How long have you been suffering? I have only had it two years and was diagnosed a couple months ago and I thought two years was a long time, but I hear so many people who have gone a lifetime or decade with no diagnosis. Very sad and not okay. I have mine mainly on my hands and arms so my dermatologist at first shot me down thinking I didn’t have it until she watched me go into a full flare. Good luck finding a new doctor! If you don’t get recommendations on here just search Google using erythroymelaglia and dermatologist in the search and read reviews

6

Melinda, I have had it my whole life more or less but not to the extreme it’s been the last few years. I’m 50 and was diagnosed with Ankylosing Spondylitis when I was 19 which is a rheumatologic disease. The EM is a secondary condition to the AS so since I’ve had AS most my life, I’ve had the EM most my life but before it was just a nuisance not life-altering like it is now. I’m surprised you got a diagnosis at all with it mainly in your hands and arms. EM is rare. Hand and arms, even more so!