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Ehlers-danlos - This Was Brought Up Today By The Specialist


iheartcats
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Hello all!

I finally saw the POTS Specialist at Stanford and it went well.

My medicine mix, fluid loading, and extra salt are all what she recommends. Florinef is something to consider in the future. I also need to try (and I know this) to exercise and get my muscles back in shape. I do wish I could afford and had room for a recumbent bike, but I'll have to make do without.

But...she's concerned I have Ehlers-Danlos. I'd never heard much about it. When I read about it online last night, it can be somewhat mild to severe up to 'bursting aortas, etc.'

I used to be more flexible before I became to ill to exercise...I remember being one of the most flexible in High School Gym. Also...I remember my 'knee' popping out when about 4 and I couldn't walk. Doctor said I was 'growing too fast.' And my skin is somewhat elastic.

So. I'm waiting to hear from Stanford to set up my next appointment with the specialist department.

Anyone know how much having EDS would 'change my life?' How will I be tested? I'm so tired of having new things wrong with me. :P

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I'm sorry your facing possible EDS. I didn't get diagnosed until 2006 at 47 years old. This was the "official" diagnosis by a geneticist.

In fact I had an appt. scheduled with my EDS Doc geneticist today, but I have a bad virus, and I had to cancel. they let me wait until this morning to see how I was feeling, but there's was no way. We had to drive 3 hours down to Cincinnati. With my POTS, other health issus and the virus, there was just no way.

Go to EDNF http://ednf.org/ and you will find a lot of information there that will explain everything you need to know about EDS.

EDS has affected my life considerably, and I would have never imagined my body would feel like this. There's days I feel like my joints and ligaments are barely holding me together. I'm diagnosed with classical EDS with hypermobile joints and vascular involvement/poor vascular tone.

Although vascular complications aren't common in other types of EDS other then type IV/vascular type, they can't be ruled completely out. A close friend of mine passed away from a ruptured aorta, and she had hypermobile EDS.

An important thing to do is have a cardiac ECHO, and an ultrasound of the FULL aorta. As far as other testing goes, genetic testing can be done for type IV, and Classical. Type III/hypermobile type is a clinical diagnosis based on information, patient history, and physical exam by a geneticist who has extensive knowledge on EDS.

Good luck to you, I hope if you do have EDS it's mild and doesn't have any major complications. Most people with EDS other then vascualr type have a normal life span-----------but surgeons and other physicians need to know if their patient has EDS, and the complications that can come with it. :(

Maxine :0)

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When I first read about it on this site, I thought 'well, at least I don't have that.' And then I read a few more things and started thinking a little more...I have some symptoms and the ruptures sound scary. Do you know whether you have it in your family history and/or whether family members had ruptures?

I am getting a referral to be tested. As Maxine wrote, if you know for certain that you have it, it will be easier to make decisions regarding your medical care -- e.g., convince a doctor to refrain from a risky procedure or from giving medications you shouldn't have. And of course, if you know that you do have it, you can be monitored.

Sorry to pose this macabre question Maxine but it's something we should know: Had doctors known, could they have prevented her death and if so, how? I could look it up but I might as well ask because you have the knowledge at your fingertips.

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Cat,

I'm sorry to hear that, and I know what you mean. It's so depressing to get new diagnoses. After a while, you're thinking, "Isn't my list already long enough?" It's frustrating.

The good thing is, at least if you do have Ehlers-Danlos, it will have been caught and the proper precautions can be taken.

Amy

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I think it's better to know that you have it, then be in the dark about it. I was diagnosed in 2005 officially. My orthopedist knew about it in 1990; but he just called it hypermobility then.

I'm happy I have an explanation for everything. I've learned not to push my joints and to brace when I exercise. I've also learned to take breaks so I don't strain my joints. I've also learned over the years how to pop things back in (and my friends have learned how to as well).

Get the cardiac echos. That's important. Also, see if you can figure out your subtype. I think I'm hypermobile, but I do need to be tested for the vascular type before I get pregnant, as it can cause A LOT of problems during pregnancy.

ednf.org is a great place to start. I write for Loose Connections (their newsletter). Feel free to PM me if you want some advice / support.

Sara

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Mrs B - Thank you so much! At least you guys 'get it.'

Maxine - I had an ECHO in January, but never and Ultrasound. I wonder, if I'm diagnosed, if I can get that approved? I hope so. I'd rather know if I have that risk! Sorry to hear yours is quite severe and took so long to get diagnosed. Do you feel 'limber?'

Tachy - Things do run in the family, I guess. I remember a 'double-jointed' cousin. Weird things on one side only. The side I know well enough, at least. I'm glad it's not the side I don't know well at all! You should be tested. I'd never even thought about it until now. I guess it IS better to know.

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Hi Cat Lady. We were Dxd with EDS a few years ago. It did not change my life mcuh but it provided many answers. If you have EDS, it could quite possibly be why you have aut issues (that and there would also be a great chance of chirai which can also cause aut issues)

I bought a recumbant bike a couple of years aga and it is great! Any exercise where I pust with my legs seems to be very helpful for over all health with me.

I also was recently given and older total gym. This is even better than the bike as I can work numerous muscle groups without overdoing it (have to be careful with EDS & joints)

You can often find those total gyms used at little cost.

Good luck,

Jen

Hello all!

I do wish I could afford and had room for a recumbent bike, but I'll have to make do without. ...

But...she's concerned I have Ehlers-Danlos. I'd never heard much about it. When I read about it online last night, it can be somewhat mild to severe up to 'bursting aortas, etc.' ....

Anyone know how much having EDS would 'change my life?' How will I be tested? I'm so tired of having new things wrong with me. :(

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Tachy, I think the ER doctors did know. The trouble is that people with EDS aren't taken seriously about how serious it can be, and that vascular complications can happen with ALL forms of EDS, although type IV/vascular type the chances are much more likely.

I don't know if her death could have been prevented, she was treated very poorly that I question the ethics of all of those hospitals who blew her symptoms off. You would think that one of the three hospitals would have had one of the docs GET IT. Her BPs were VERY HIGH with very narrow pulse pressures, and this was completely out of her usual symptoms. She was so upset those weeks. Her EDs doc did do a ECHO and ultrasound of her heart and aorta a year prevous to this. However, her aorta was thinning, and I don't think the ECHO picked this up. When she went to the ERs, they could have done an abdominal CT because she complained of abdominal pain, and pain in her mid back.

If the ER docs would have known more about EDS, taken her physical complaints seriously, and the obvious HI BP issue in their face, they would have done a CT scan and caught it, or at least I assume they would. She could have been taken to the Cleveland Clinic. However, she was there a few weeks before this to see a spine surgeon, and they didn't know much about EDS, and I can't find much on their website on EDS. I went there to see spine surgeons for my cervical/cranail instability, fluid in mastoid area of skull but no history of middle ear infection, left vertebral artery missing, blown disk on thoracic spine, and other spine issues.

These surgeons didn't know much about EDS either, and one surgeon was very arrogant and dimissive. I stood up to him, and I informed him that he needs to look at the DVD from EDNF on vascular EDS, as surgeons especially need to know about the vascular complications, and how they are handled if they occur. He said "duly noted" in a very condescending manner. I "handled" the situation, and I continue to talk with the doctors at the Cleveland Clinic about EDS. The other doctors have been more receptive, and one neurologist has taken me on as a regular patient.

Cat Lady I have been hypermoblie all my life, and had I known about my EDs back then I would have never stood on my head and folded myself up into a box. As a kid I used to show off all the positions I could put my body into. As I became a teenager, and up to mid 20s, I workd various jobs that were physical, and I know this contributed to a lot of my spine problems combined with the EDS. Retrieving grocery carts was the worst on me. I ended up working in commercial collections in an office after that, and eventually became an office manager over the next 16 years while going back to college. I had to drop out of college due to crashing with my POTS---and at this time still didn't know I had EDS. I went back to college after cervical spine surgery and complete a certificate program in medical coding. I hope to work again someday, but for now I'm on disability.

Right now I'm battling a virus, and coughing is horrible on my neck.

Doctors need to look outside the box, and LISTEN to thier patients. I notice a lot of discrimination taking place, especially on woman-----and it's especially prevalent among overweight woman, many of them being treated with egregious disrespect.

Maxine :0)

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