Eds

[delphicdragon]

I know many people on this board have joint hypermobility or Ehlers-Danlos Syndrome. I was wondering what type of Doctor you see to treat this. I have an orthopedist that I see for the joint aspect of it, but I know there's a cardio component along with the neurological component. Thanks.

Sara

[mkoven]

Excellent question! Some see a geneticist to get it coordinated, but not all are knowlegeable. I've had to do my own integrtion. I see a sports med doc for joints, and he knows some about other relevant issues. I've had poor luck with rheumatologists.

[Maxine]

I see a geneticist in Cincinnati. Dr. Tinkle from Cincinnati Children's Hospital, and previous to him I saw Dr. Wenstrup from the same hospital, but he has moved more on the research end of things. Dr. Wenstrup was the first to diagnose my EDS in 2006. This was my official diagnosis--- . Back in 2004 I saw a neurosurgeon who works with CCI (cervical/cranail instability----and chiari related conditions) who thought I had EDS, as they also see a lot of patients who also have EDS. When I went to Cleveland Clinic the physical medicine doctor said I was hypermobile.

My EDS caused the CCI, and the rest of my spine is deteriorating from it as well. The joints and ligamants are affected all over my body with subluxations and pain, along with vascular complications and intestional involvement.

In 2006 a lady from my area called inquiring about local support meetings, and I told her we don't have them anymore, but recommened other options to her. She happened to also suffer from EDS, and told me about Dr. Wenstrup. He diagnosed EDS type III with vascular and skin involvemet, but the diagnoses was later changed to classical EDS by another geneticist while participating in the NIH EDS study this past April.

EDS is very serious, and can affect more then you think, so it's important to get to a physician who is well studied on EDS, and all the components that come with it.

I would have never imagined that the majority of my health problems stem from my EDS.

Maxine :0)

[Radha]

is there any medicine to help any of the EDS symptoms? bone or vasular symptoms?

Radha

[Maxine]

Here's a few that I found on the EDNF (ehlers danlos national foundation) web site:

For EDS with autoimmune components:

Plaquenil:

http://www.webmd.com/drugs/drug-6986-Plaqu...=Plaquenil+Oral

Methotrexate:

http://en.wikipedia.org/wiki/Methotrexate

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Vicodin:

http://en.wikipedia.org/wiki/Vicodin

Nocor:

http://www.drugs.com/norco.html

Ultram:

http://www.drugs.com/ultram.html

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Baclofen:

http://www.drugs.com/baclofen.html

Skelaxin:

http://www.skelaxin.com/skelaxin/index.aspx?text=1

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Neurontin:

http://www.drugs.com/neurontin.html

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OVC pain meds:

Tyelenol

Motrin

Advil

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I'm assuming meds for vascular symptoms would be vasoconstrictors for the poor vascular tone that comes with EDS:

http://en.wikipedia.org/wiki/Vasoconstriction

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Maxine :0)

[Radha]

thanks for all the info maxine,

Radha

[mkoven]

At this point, I believe all meds just treat the symptoms. Some have advocated large doses of vitamin C to help with collagen. But I think we're a ways off from genetic therapy. Otherwise, it's the standard exercises for joint stability, bracing, pacing, etc. www.ednf.org is a great resource. And then general good health maintenance--good sleep, eat well, etc. Exercises should be done in small ranges of motion where the joint is more stable-- so if it hurts or subluxes you, back off, and try a smaller range or a different exercise. I do best with closed chain exercises-- so for leg exercises, I have my foot on the ground, not just in the air. Closed chain exercises encourage better stability and are closer to how we use our bodies in life. I've gotten better over time at knowing when i'm about to get injured, and adjusting. Pilates and trigger point therapy have really helped me. And I have braces that I wear as needed for different joints. I always where my sacroliliac support, because I'm always unstable there. And for me, birkenstock shoes are a godsend. I have braces for knees, ankles, wrists, neck, hands, and fingers that I only wear as needed. (they're like an umbrella-- if I have them, I hope not to need them!)

[Radha]

what exactly is the sacro back support, is it a belt or a brace? wear did you get it and how much is it, my lower back is very bad, thanks for your help

Radha