Ehlers Danlos Syndrome

[Anonymous]

Does anyone have any advice for doctors to go to for EDS?

Ive read good things in this forum about Dr Francomano - but I looked her up at it looks like her office is only in Towson, north of Baltimore nowhere near the trains, etc.

How about Hopkins? There is a clinic there, right? Anyone like a particular doctor there? Any feedback on their practice?

[Anonymous]

Dr. Alan Pocinki - he's on K street.

[Anonymous]

Thanks - his bio looks like he would fit me well.

Is his office staff good? I feel like that is a big part of getting good care.

other suggs much appreciated

[Anonymous]

Anonymous wrote:Thanks - his bio looks like he would fit me well.

Is his office staff good? I feel like that is a big part of getting good care.

other suggs much appreciated

To be honest, his office staff is middling at best. Pretty standard for DC. You do get a lot of time with him as a doctor, though. He is absolutely fantastic, although hopefully you'll get some more recommendations.

[Anonymous]

I go to Dr Francamano -just a check in once a year. If you have acute problems especially I would highly recommend her.

[Anonymous]

I have EDS type III diagnosed by the clinic at Johns-Hopkins. What exactly do these doctors do for you? I do have my eyes and heart checked regularly but what else can a doctor do?

[Anonymous]

I always thought there wasn't just one kind of doctor that deals with EDS--I see a pain specialist, an orthopedist and a internist for managing my symptoms. Do these doctors look at all of those things?

[Anonymous]

I am wondering if I have EDS and am wondering if I should get it checked out. Symptoms -- lots of GI disorders and eye disorders, loose ligaments but no joint pain. Should I look into this?

[Anonymous]

Anonymous wrote:I am wondering if I have EDS and am wondering if I should get it checked out. Symptoms -- lots of GI disorders and eye disorders, loose ligaments but no joint pain. Should I look into this?

A rheumatologist could be helpful to sort this out. I was diagnosed with hypermobile type EDS at age 40, but had joint pain for about 5 to 8 years before that. Dr. Levy at Johns Hopkins diagnosed me. He is also a geneticist. Dr. Francomano (sp?) is also highly regarded but from what I hear you'd have to wait a year to get in. Not sure of the wait to see Levy.
http://www.hopkinsmedicine.org/gim/faculty/levy.html

[Anonymous]

I see Dr Pocinki and love him, but there are a few downsides. First, he's not technically taking new patients. I tried a while back (year or two ago), and his office staff shut me down com

[Anonymous]

Anonymous wrote:I see Dr Pocinki and love him, but there are a few downsides. First, he's not technically taking new patients. I tried a while back (year or two ago), and his office staff shut me down com

Sorry, phone hiccup! That should be "completely." Didn't even say "call back in a few months;" they said that would be useless because he is so overbooked. His name came up again this year, and my extremely helpful primary care doc offered to email him and beg. That worked, but it takes a doctor willing to intercede, and no guarantees. He doesn't take insurance. And once you have a diagnosis, he may or may not be able to do much for you depending on your issues. I may be wrong here, but I suspect his strongest area is the autonomic disruptions and sleep issues in EDS (if you've got sleep problems, definitely google "Alan Pocinki sleep EDS" for one of his powerpoints) -- for joint issues, eg, you'll just end up going to a physical therapist or rheumatologist. Plus, some other doctors won't consider his diagnosis a "real" one because it's based on observation and history rather than genetic testing.

My issues are firmly in the sleep and orthostatic intolerance camp -- I'd take joint pain forever if this crushing fatigue would go away -- so he's the perfect doctor for me right now and I'm still holding out hope for life-saving changes. Don't want the above to sound like I don't like him! Just wanted you to have all possible info for your decision.

[Anonymous]

Pp. what are your sleep issues?

[Anonymous]

PP here. Many people with EDS have uneven autonomic nervous systems, with surges of adrenaline at inappropriate times. That is a problem for me, and the adrenaline both keeps me from getting to sleep (heart racing, body wired, even when mentally I don't feel stressed) and wakes me up with racing heart in the middle of the night.

Here's one of Dr Pocinki's speeches on the subject: http://www.ednf.org/images/2013Conference/Presentations/Pocinki_EDNF2013_2slidesS.pdf. Reading it was a lightbulb moment for me because it described exactly what seems to be happening to my body. Sure enough, I had a sleep study that turned out just like the examples in his slides -- an average of 1 mini wakeup for every 3 minutes of sleep. Haven't gotten far enough in the treatment process yet to find out what to DO about this, but the slides linked above give lots of trial-and-error ideas.

[Anonymous]

Anonymous wrote:PP here. Many people with EDS have uneven autonomic nervous systems, with surges of adrenaline at inappropriate times. That is a problem for me, and the adrenaline both keeps me from getting to sleep (heart racing, body wired, even when mentally I don't feel stressed) and wakes me up with racing heart in the middle of the night.

Here's one of Dr Pocinki's speeches on the subject: http://www.ednf.org/images/2013Conference/Presentations/Pocinki_EDNF2013_2slidesS.pdf. Reading it was a lightbulb moment for me because it described exactly what seems to be happening to my body. Sure enough, I had a sleep study that turned out just like the examples in his slides -- an average of 1 mini wakeup for every 3 minutes of sleep. Haven't gotten far enough in the treatment process yet to find out what to DO about this, but the slides linked above give lots of trial-and-error ideas.

I'm getting 'page not found'--do you have another link to the powerpoint? I was dx'd 20 years ago, and have has testing done that shows abnormal adrenaline stuff, but didn't know it was tied into the EDS.

[Anonymous]

Link problem is probably the period that got added at the end of the sentence. Try one more time without the period.

And PS, curious for others here, if you have kids, are they affected? So nervous about my girl every time a joint seems to give in or she gets an unexplained ache. But she's still really young and don't want to "medicalize" anything this early. Terrified she'll be a 3rd generation wrecked by this, praying either it passes her by or early management will help forestall the worst later.