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Old 09-07-2012, 11:25 PM   #1
Join Date: Apr 2008
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notafan HB User
Ehlers Danlos Issues

Hi everyone,
I started with my primary care doctor after I began to do some research on some of the symptoms I was having (hypermobility) after suffering a dislocation of my shoulder. I was referred to a rheumatologist for connective tissue issues as my primary doctor said I was an 8/9 on the hypermobility scale. Unfortunately, the rheumatologist said that he was not familiar with my problems, and that I would need to see a genetics doctor. He did order an echocardiogram, which I had, and it came up normal Ė though the lady who administered the test stated my aorta was dilated more than she would have expected for someone my age. (Iím 29, by the way).

I found a genetics doctor, who is by no means local (The doctor is at Kansas University, and I live in Missouri) but they are the closest doctor and my insurance doesnít cover a penny. Iím worried Iím going to get in over my head when it comes to expenses. Should I go through with this appointment, or is it possible there are better options? The appointment isnít until late October, but I thought Iíd weigh my options out first.. =-/

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MountainReader (09-13-2012)
Old 09-12-2012, 11:20 PM   #2
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Odesse HB UserOdesse HB UserOdesse HB User
Re: Ehlers Danlos Issues

Hi there! I have EDS vascular type, mistyped in 2004 and properly typed in 2008.

From my experience, good rheumatologists who know a thing or two about EDS are hard to come by. I've seen quite a few (and am dreading an upcoming appointment, also at the end of October) and all of them have been anywhere from mildly useless to downright horrible.

My geneticist, on the other hand, was quite good. Ultimately, EDS is a genetic condition, so a geneticist is the right specialist to see if you want to get a firm diagnosis. Not only can they say yes or no regarding whether or not you even have EDS, they can also determine what type you have, which can make a difference in your future treatment, monitoring, and general medical care.

One thing to consider, based on my experience: Having a diagnosis in black and white hasn't always made a positive difference. Just because I have a name for what's ailing me doesn't mean my doctors have the knowledge to help, and there is no actual cure for this.

I am not saying this to discourage you from going to a geneticist. I think you should, and I would if I were you.

Since you have to travel and pay out of pocket anyway, have you considered going straight to Maryland and seeing this country's leading EDS specialist, Dr. Clair Francomano? I've never been to her (too sick to travel), but my friends who have say she changed their lives. She can't offer a cure, but she can give you a correct type, an intensive work-up, and lots of information for your local doctors. She also does her best to work with your doctors from long-distance, but you have to go see her in person first.

Just some advice from a 9/9 on the bendy scale. It's not a fun thing to have to live with, and we can use all the support we can get.

Last edited by Administrator; 11-06-2012 at 02:18 AM.

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notafan (09-14-2012)
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Old 09-14-2012, 11:08 AM   #3
Join Date: Apr 2008
Location: USA
Posts: 62
notafan HB User
Re: Ehlers Danlos Issues

Thank you so much! I will definitely look into other resources. I don't believe traveling would be much of an option right now, as it would be too complicated to schedule it around work. I'm mainly worried about what it might cost. I don't want to run into a bill of thousands of dollars just because I tried to be thorough and see the geneticist.. I just have no idea what something like this might cost! Definitely true, a diagnosis might not necessarily help, but in a perfect world, I really SHOULD go see some doctor that knows more about the condition...

Last edited by Administrator; 11-06-2012 at 02:17 AM.

Old 09-28-2012, 09:59 PM   #4
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Join Date: May 2012
Location: houston
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cindygee HB User
Re: Ehlers Danlos Issues

I agree that you should go. Ask them for a cash discount. Why isn't your insurance helping? My son has an appointment in Feb. and that doctor will be out of network. Since his insurance doesn't have one in network within a certain range, they have a clause where it will be treated as network.

I was actually thinking of cancelling his since younger siblings were diagnose a couple of weeks ago with the Hypermobility type. (Their cut-off age was 18) since Oddyssey said she was classified wrong the first time, I think he better keep that appointment.

This is the way I look at it....its not good to have EDS, but its worst to have it and not know you have it. I'm doubting that its that rare, but more rarely diagnose properly.


Old 09-29-2012, 07:45 AM   #5
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Re: Ehlers Danlos Issues


I believe that your gastro & dental issues are caused by the EDS. All of my son's teeth need work and he's younger than you. My daughter who is even younger has all the gastro problems.

You really shouldn't have any scope performed until the specialist types you. Same with any dental work. The dental should fall under medical insurance since its a result of a medical condition. Of course they will initially deny it, but appeal and then appeal again.

Start getting an extensive family history to bring to your appointment. Of course they need to know about your issues, but also your parents, siblings, nephews & nieces, aunts & uncles, cousins, etc... If any has died, they need to know why & what age. As far as females in your family tree, is there history of miscarriages. Any heart issues, anyone hemorrhaging. I'm sure I'm forgetting somethings. The questioning will take about an hour. Baylor emailed me forms that I complete prior to my girls' apt about them. Without it, it would have been even longer. ** bring the report from your echo-that will be extremely helpful. My daughter had one prior and since it was at the same hospital that were able to review it.

I was so relieved that they didn't have classic or vascular that I couldn't think of any questions at the time. So....write your questions now & take them with you.

Most NOT freak out in the meantime. I think you said you do have insurance, but if you don't get it now.


Last edited by Administrator; 11-06-2012 at 02:15 AM.

Old 10-10-2012, 08:16 PM   #6
Join Date: Jan 2008
Location: Boonville,NC,USA
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samantha823 HB User
Re: Ehlers Danlos Issues

Hi from another EDSer! I am hypermobile/classical types. I have found that when you have EDS, you have to do a lot of the investigative work on your own as there are not that man doctors that know what it is or even how to treat it.

Personally, I wouldn't spend a lot of money just to get a diagnosis, unless you absolutely need the diagnosis for a reason. I ended up taking a lot of information to my orthopedist and he is the one that diagnosed me.

As far as your aorta being dilated a litte more, I would see a cardiologist about that since they are the ones that deal with anything to do with that system. What I have found out is even though I have a diagnosis, it doesn't really matter, because the geneticist isn't the one that is going to be helping me take care of my body. I hope that helps some

Last edited by moderator2; 10-10-2012 at 08:18 PM. Reason: posted disallowed website

Old 01-15-2013, 01:18 AM   #7
Join Date: Jan 2013
Location: Las Cruces
Posts: 5
Darydien HB User
Re: Ehlers Danlos Issues

Hi hi another EDS sufferer...when I got diagnosed (in 1995 ish?), it was really really rare, hard to find anything about it anywhere. The only reason the rheumatologist even knew about it was an article in one of the obscure medical digests. Originally I was given the name Arthoclasia...which is the one with the dialated heart valves. My dr.s and I have decided that at 44, with no heart related issues, that I am possibly a Classic. Medicaid probably won't cover the bill for the soft tissue analysis, not that knowing would change much in my treatments. At this point, I've dislocated almost everything at least once. I even dislocated the last joint on my pinky from hitting the shift key. It can be embarrassing. EDNF has quite a bit of information and I keep the CD for dr.s information with my medications. EDS patients need different treatments for things like open wounds and such due to our elasticity and poor healing rates. Surgery is also tricky due to our poor healing rates and idiosyncrasies in blood pressure and sometimes heart rate.
I am with a Pain Management Osteopath, an Orthopedic, and my PC. I also have a therapist/psychiatrist (Depression can sneak up on you and a therapist can help with the anger issues.)I don't know how many dislocations you've had but you might want to look into these professionals too. For me, the constant dislocation problem has left me with the chronic pain issues-just a heads up, it might be in your future.
I had a rheumatologist for a time, but it wasn't as effective as having the pain specialist and orthopedics...
little side note-surgery on joints for hypermobility issues are often a bad course, a lot of the ppl with EDS who do have surgery on a joint have to return for more surgeries on the affected joint.
curiousity? did they diagnose you also with Raynauds?

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