Scared I May Have Vascular Eds (2 Year Waiting List!)

[Lette]

Hi all,

Its been a while since I was on here, I was doing so well and recently I have been fainting all over the place and had a really hard time during 'That time of the month'!! But anyway!! I was wondering if any of you knew more about Pots and EDS, I have been properly diagnosed with pots but my specialist and a few Dr.s I have met think I have EDS also as I have sore and hyper flexable joints, stretchy, see through pale skin adn the scary part is I bleed from various areas without prior injury or force, namely Teeth and other sensitive areas, this is what makes the doctors think I may have vascular EDS.

So I was put on a waiting list here in the hospital I go to here in Ireland and I hear nothing for ages (about 4 months) so I decide to ring and see what the story is, only to be told I have been put on a 2 year waiting list before ill be called...!!! If I have Vascular, I have read and have been told it could be deadly!!! I need to know before we decide to have kids or before something bad happens, 2 years is just not possible!! I am doing everything I can to get back to my specialist before my next appointment in January but right now I am at a loss as to what to do!!! :-/

[juliegee]

Oh dear Lette-

I have been there and know how scary it can be. I can't imagine having to wait such an incredibly long time for the test- it seems inhumane to me. To comfort myself while I waited, I joined the EDNF forum- for the vascular folks. Talk about a brave group. Almost all had aneurysms, dissections, burst uteruses, etc...and THEY were comforting me. You might consider doing the same. Somehow, I found it oddly comforting to hang among them. They had great attitudes- preventative tips and doctor recommendations, etc. I never met a more courageous group.

I have a strong immediate family history of aneurysms/dissections, etc. and evidence of very fragile veins on myself- they burst if I sneeze and my test was negative. There is a VERY good chance that yours will b as well. EDS IV is VERY rare. Your docs are wise to rule out the possibility. I am in the states. From what I recall, there was only ONE lab in the entire country that ran the test. i also had to wait eons (months and months) before my insurance finally agreed to pay, etc. Blood had to be drawn locally, then sent refrigerated to another part of the country. Results took months. It was waiting & more waiting.

I hear that your wait is ridiculously long compared to mine. I would appeal on the basis that you might die waiting for the test I certainly don't believe that; but you most certainly need to know... before starting a family at the very least. I would definitely have a complete screening, maybe a CT or MRI to set your mind at ease if they truly make you wait.

Please know that I'm sending lots of love and prayers. i KNOW how scary it is. I suspect that you are clear. Have your heparin levels checked via blood test. When mast cells degranulate (causing autonomic symptoms) they can drastically elevate heparin levels causing your symptoms.

ALL the BEST-

Julie

[Sallysblooms]

Two years, that is unreal.I am so sorry!

[sandymbme]

Lette-

I am soooo right there with you! I and my doctors have long suspected that I have EDS type III, the hypermobile form. But my hysterectomy in January raised new concerns, my surgeon had a heck of a time removing the uterus because it was falling apart. So I am currently waiting for testing as well. (Also I have family history of a string of early death due to "heart issues" and all sorts of bizarre other genetic disasters.) I was supposed to have it Nov 11 while seeing a variety of docs at the Cleveland Clinic. But scheduling fell through, and no one could agree who I needed to see, and the doc has no openings until the end of the year. I am pulling my hair out. But only to a degree. Because I realize, even were it positive, I, like anyone else am not guaranteed any shorter life than I would have without it. I could get hit by a bus tomorrow. I am tired, beyond tired, of living my life as though under a cloud of doom. So I have decided to focus on the things that bring me joy. I am happily planning my wedding next year, and refusing to rush any aspect of it. I am settling in to the lovely home my fiance bought for us, and decorating it and making it our own. I think you have to do that at some point, to the largest degree your health permits. We have learned to accept the reality that no plan is ever set in stone, and to set our expectations accordingly. But the fear, absolutely, is a real and palpable thing. Hang in there!

Sandy

[Chaos]

Wow! Two years is a REALLY long time to have to wait for a blood test. I had the test done in the summer of 2010. I seem to remember it was only a matter of a month or so before I had results. It was negative.

I read in a book titled Hypermobility, Fibromyalgia and Chronic Pain, written by a couple of EDS specialist MDs, that people with Joint Hypermobility Syndrome (or what a lot of docs are calling EDS-HM) tend to have bleeding abnormalities. ( When I was having kids, I had so many bleeding issues they sent me to hematology to be worked up for Von Willibrands. That was negative, as were the other thousands of dollars of tests the hematologist ordered to try to figure it all out.) I found it interesting that they even commented in this book about how patients should be sent to hematology to be worked up for Von Willibrands as a precaution since you can have EDS and Von Willibrands both, but most of the time it will be a negative work-up and just chalked up to having joint hypermobility.

Hopefully you don't have the EDS IV type but of course you'll be more comfortable when you know that for sure. I wonder if your primary care doc could do the blood test if they could figure out how to draw and store it properly? Not sure what your rules are over there for insurance coverage.

Good luck! Sorry you're having to worry about this for so long!

[kluesyk]

I was recently told I have probable EDS-type III hypermobile and possible vascular involvment by a geneticist. I am waiting to do the blood tests because my insurance will not pay for any kind of genetic testing. (VERY EXPENSIVE) I also have a strong family history of death by aortic dissections (father at 70, his mother at 62, and most probable her mother at 47). My paternal uncle also had nine anerurisms before his death at 68.

My aorta was recently scanned and I was ok, so I guess that is all I can do.

What would be the treatment other than checking the aorta if I would find out I have this?

[juliegee]

From what I can glean- frequent screenings and repairs as warranted. Many live years beyond the average life expectancy of 47 (?) by being cautious.

[Lette]

Well I have gotten an updated appointment to see my pots specialist so I am going to do everything in my power to get an expediated appointment to find out about EDS when im there, it will be early November so fingers and toes crossed that he will be able to sort something!