Did You Get An Eds Diagnosis Before Or After Your Pots Diagnosis?

[kjmom]

After reading about EDS, I talked with my daughter's doctor today about the possibility that she has it. I knew nothing about it before, but she seems to meet the criteria for most of the hypermobile type: super flexible fingers and elbows, GI problems, velvety, translucent skin that shows red spider veins on her cheeks, dental problems, high palate and spondylolisthesis. I've never realized that all of these seemingly diverse symptoms go together. He wants her to be evaluated at the children's hospital metabolic disorders clinic.

So my questions are:

Which diagnosis came first for you, EDS or POTS?

What were your EDS symptoms?

Who diagnosed you?

Is there any particular treatment?

Thanks!

[brownsea]

hi kjmom

i was dx with pots first, i think nearly a year later eds was dx.

a rheumy dx my eds, however i sought him out, due to the fact that he treats people with eds in england. i thought instead of going to a local rheumy i would go straight to the top. as by this time i was fed up with not knowing what was wrong with me after so many years.

im due to go into rehab at stanmore, where they will give me physio for the eds, and pain management. at present i dont have any meds for eds.

i had all the classic symptoms of eds. stretchy skin, bruising, flexible joints, marfan traits too, long arm span, tall, skinny, high palate, i just wish i was dx earlier on in life, would of saved a lot of hassle later on, with not knowing what was wrong.

good luck.

[kjmom]

Thanks!

Another question: do you have family members with EDS? We don't seem to have a family history but I've read it's genetic.

[Chaos]

I suspected EDS for years before my POTS diagnosis. Didn't get an "official" EDS diagnosis until after my "official" POTS diagnosis however.

I personally can't recall either of my parents or extended family members being particularly hypermobile although both my sisters are so there is definitely a genetic link there somewhere.

The only treatment that I know of, is prevention. Since your daughter is young, it's great that you're figuring this out early for her. Preventing joint injury is a huge part of the "treatment". Since people with this condition have such ligamentous laxity and weak muscle strength they usually abuse their joints (unknowingly) which causes early and painful arthritis. If she can get into therapy with a knowledgeable PT, she can hopefully be taught some exercises to help keep her strong and also postural awareness so she knows where "normal" range of motion is, vs where she's "used to" living in her joints. Also, hopefully, she can be taught that all those fun "party tricks" that gross people out when you are very flexible are actually damaging to her joints and should be avoided as much as possible.

[LindaJoy]

I was diagnosed with POTS in 2005. I just got a Benign EDS diagnosis four months ago, although it's been pretty obvious I've had it since I was little. My son probably has it, as well.

My doctor based it on physical characteristics, pretty much nothing else. And, that I pool so much, so must be flexible blood vessels, in his opinion.

Linda

[chipper]

POTS in 1990 and EDS 2010. My daughter has Hypermobility worse than me, but my dys. is much worse. She has fibro.,that can be disabiling at times.My grandmother could touch her hands to the floor.

[fiona-jane]

hiya-

Which diagnosis came first for you, EDS or POTS? my EDS diagnosis came 1st in 2008 and my PoTS was diagnosed last year.

What were your EDS symptoms? Frequent joint dislocations and subluxations, hypermobility, dental crowding and non responsiveness to local anaesthetics, frequent muscle, ligament and tendon injuries, easy bruising, piezogenic papules on feet and wrists, thin and translucent skin thats stretchy, velvety and doughy, blue scera, wide scars, chronic pain and fatigue, load of GI symptoms incl gastroparesis, reflux, and gi spasms. there are probably more as my report was huge but i cant remember them all now... and its past my bedtime so i'm tired!

Who diagnosed you? my EDS was diagnosed by Professor Grahame at University College London Hospital and my PoTS was diagnosed by Professor Mathias at the National Hospital for Neurology and Neurosurgery, both in London uk.

Is there any particular treatment? my tummy problems can be eased with medications and diet alteration but the only other treatments for my EDS are painkillers and physio. my PoTS cant be treated by any meds as my blood pressure and heart rate levels are too variable, so i have to manage it with salt and fluid loading

hope this helps

[kjmom]

Thank you, Fiona. Can I ask what you take for your GI issues? Those are my daughter's main problems and we haven't figured out anything that gives her long-term relief yet. I guess it's possible that her GI issues are from EDS but since she doesn't have the diagnosis yet (we don't see the doc until August!) we aren't treating that aspect.

[rubytuesday]

I was diagnosed with EDS years before POTS symptoms started. A rheumatologist, specializing in fibromyalgia (which i also have) diagnosed mine. There really is nothing more for me to do than supportive health care team that includes a neurologist, periodic physical therapy and speech therapy (for breathing exercises for the Vocal Cord Dysfunction), a good orthopedic surgeon, rheume, a hemeoncologist who wrote my treatment plan for the Delta Granule Storage Pool Deficiency, a cardiologist and cardiac specialist in dysautonomia, and for me an immunologist for IgG/IgA deficiencies, a gastroenterologist and of course, my PCP. (On occasion I've had interventional radiologist) I do an exercise program religiously but cautiously. I have enough braces and splints, compression hosery, heating and ice wraps, and DME to open a store (to support various body parts). I also saw a genetecist who told me to keep doing what I'm doing. We're out in very rural area and I'm first (known) that some of my docs have seen but they are thinking now along those lines and reading more about it and when I have some problem, may explain to me how it is also EDS related (like my VCD and the pooling of blood in my legs and feet).

[L4UR3N]

I am a nurse and had never even heard of EDS before I was diagnosed with POTS. Unfortunately the medical community is largely uninformed about these disorders, and doctors who do actually know what EDS is, think that it is too rare for any of their patients to actually have . When I was initially diagnosed with POTS I did a lot of research trying to figure out what could be causing it. I literally went to my doctor with a long list of things I wanted to be tested for. He tested me for everything BUT the EDS, stating that it was too rare, and in all his years of practice has never seen anyone with it. At the time I was content with this and didnt pursue it further. It wasnt until I saw a neurologist who specialized in POTS that EDS was brought into the picture again. He asked me how flexible I was and had me demonstrate several things, then sent me to a geneticist who diagnosed me.

After learning more about EDS so much of my life now makes sense. Seemingly unrelated medical problems are actually all due to EDS. While I am happy to have a diagnosis, I'm frustrated by the lack of awareness in the medical community. I have to explain everything any time I see a new doctor. I have met several doctors who claim to not even know what EDS is, although they are taught about it (briefly) in medical school. Nurses on the other hand, are not taught about it. I feel fortunate to know what it is, and have had several patients that I have suspected to have it. We just really need more education and awareness.