I Was Dx With Eds By Stanford Dr. Friday

[MelissaCrystal]

Hey guys,

So all of you who thought I had EDS were right. The biggest indicator: my history of hip dislocations. One of you had told me something along the lines of, "the hip is supposed to be the most stable joint in the body, so if you're dislocating it at a young age, it's definitely not normal." Dr. Karen Friday, a Dysautonomia specialist at the Stanford Cardiology Clinic, basically told me the same thing. She also said there are not many other tissue disorders that can cause POTS AND dislocations, so that is why she is 99.9% sure I have EDS. I'm getting a genetic test to see which type, but she's pretty sure it's the type III. It's definitely effecting a lot of my body though, so she wants me to rule out the others.

I don't have stretchy skin, and I don't have any of the EDS typical features, but I can move a lot of my joints abnormally (not all, and not crazy-flexible). I'm not generally flexible, like I've known a lot of my friends to be. I actually have really stiff muscles, so not a lot of range of movement in most places, but my ligaments are very loose and I subsequently have floppy ankles and unstable hips.

So if any of you have suspected EDS but have your doubts about having it, my advice is just go and get it checked out to make sure. Might be worth it for your search =) I had my doubts, but now it makes so much sense because of my bruising, and skin tearing. Stuff I thought was normal turned out not to be.

Thanks for your help guys! Now I can focus on treatment of my symptoms =) I'll be grabbing my first dose of Florinef on monday.

I'm going to make a post sometime for the bay area people who are looking for a doc, because Dr. Friday has been the best thing that ever happened to me. I highly recommend her, and she gave me sooo much info on my treatment options that I feel it'd be a waste not to post it for others who may be curious. A lot of people have messaged me in the past, asking me who my doc was because I was from SF, so I gotta tell them now---it's Dr. Friday and it's imperative that they see her =)

I am so glad I discovered these forums and I am glad it is changing people's lives for the better, including my own!

[firewatcher]

I'm glad you got a dx. Hopefully you'll get the right meds and be back full-force at school. It is hard to deny doing what you love for so long.

Good luck!

[iheartcats]

I was relieved after my POTS diagnosis. At least I knew I had something - all my crazy symptoms no one could link and I was running from doctor to doctor was finally explained in one diagnosis!

Well, exciting for you! Let us know about the genetic test (always interested in what those show!) and looking forward to your post on Doc Friday. It's hard to find a great local doctor (I have one in the Chicago area in case anyone needs info)...

I am not that familiar with EDS but hopefully they have a good treatment for that, too.

[Rachel]

I'm glad you were able to get a diagnosis.

Hooray for putting together more pieces of the puzzle!

Rachel

[Maxine]

Glad you have a doc that looks outside the box. Can you see and EDS specialist/geneticist? Skin tearing is found in people with classical type EDS.

It's good to see a specialist who works with connective tissue disease primarily to make sure you have the correct diagnosis of which type of EDS you have.

EDS can be mild to quite disabling. Right now just standing up seems to be a challange for me. Classical EDs can also affect the intestines, and possible other digestive tissue.

I see you live in California, so Dr. Clair Francomano is probably too faw away, but here's a link on her anyway.

If you go into the EDNF (ehlers danlos national foundation) web site, you can See EDNF is actually based in California.

Balguma Freddie -------------------------apparently he's a cardiologist, and I have no idea on his experience on EDS

He was listed on the physician's directory in EDNF

WaySearch 630 N 13th St

Suite C Upland

CA

91786 USA

Phone: 909-981-6635

http://www.gbmc.org/genetics/harveygenetic.../francomano.cfm

When I went to the EDs study at NIH/NIA my diagnosis of hypermobile EDS III was changed to classical because I have some of the skin features, and the excessive diverticuli in large bowel, and the large 5mm divertculum in duodeum/small bowel.

It's also very important you have good follow up care with a specialist for EDS, because it can cause many other problems------as we all well know. POTS/ANS dysfunction being one of them. Spine instability is another very serious problem that can result from EDS.

I see an EDS/connective tissue specialist/geneticist at Cincinnati Children's Hospital---Dr. Brad Tinkle.

He wrote a book on EDS.

http://www.cincinnatichildrens.org/svc/fin...brad-tinkle.htm

http://stores.homestead.com/hstrial-LDarr/...t-of/Detail.bok

Good luck to you.

Maxine :0)

[delphicdragon]

Congrats on your diagnosis, but so sorry that you had to join our club. Good luck with finding treatments that help your pain as a result of EDS; I have been unlucky thus far as I can't function on opiates. I find that bracing helps immensely on bad days (though my ortho doesn't want me to do it all the time) and I've learned over the years how to pop a stubborn joint back to where it's supposed to be.

Seems like we all should be gymnasts who are relegated to the floor exercises.

Sara

[ramakentesh]

Im glad you got that diagnosis.

According to the stuff on Dr Julian Stewart's website, the form of POTS usually associated with EDS is 'Normal Flow' POTS characteristed by excessive blood pooling on standing nearly exclusively in the stomach area and excessive peripheral vasoconstriction (of feet and hands) on standing. One of his studies suggests that the best medical intervention for Normal Flow POTS is a medication called octreotide - because this reduces stomach venous pooling specifically through a reduction in bioavailable Nitric Oxide.

[valliali]

Melissa, I am so glad you have found a diagnosis!!!

I can second Melissa's assertion that Dr. Friday is incredible. I wasted two years going from doctor to doctor before seeing Dr. Friday who is world's beyond any other doctor I have seen. Anyone else in the Bay Area, or California for that matter (I travel three hours to see her), it is soooooooooooooooooooo worth it!!!!

[MelissaCrystal]

I was relieved after my POTS diagnosis. At least I knew I had something - all my crazy symptoms no one could link and I was running from doctor to doctor was finally explained in one diagnosis!

Well, exciting for you! Let us know about the genetic test (always interested in what those show!) and looking forward to your post on Doc Friday. It's hard to find a great local doctor (I have one in the Chicago area in case anyone needs info)...

I am not that familiar with EDS but hopefully they have a good treatment for that, too.

When I was diagnosed with Dysautonomia/POTS I was relieved for the same reason, but I've been soooo insistent on finding out the cause of the Dys/POTS, I'm glad I didn't give up. EDS causes POTS, so now there is no more searching for me =) Unfortunately I can only treat the POTS/symptoms, not really the EDS. Are you looking for the cause of your POTS or are you just going to treat the symptoms as best as possible? My curiosity eats away at me because there are so many causes of POTS/Dysautonomia.

I'm thinking I have the Classical type because of the wide-spread range of effects on my systems. But I gotta wait until the genetic test to know anything for sure =)

[momofsara]

Melissa--I'm so very glad you have a diagnosis at long last. Now on to the treatment, and I hope it does wonders for you. Also I'm happy you have such a good doctor.

Best always--Susan