Before I was able to get into a geneticist, I had to jump through several hoops as well. I live in AZ, and according to what I could find on google and getting Aetna to confirm, there is only 1 'adult' treating geneticist in the entire state (others were classified as pediatric geneticist, and therefore wouldn't see me for EDS diagnosis). I had to go to my primary care physician with joints out of place, demonstrate hyper mobility to rheumatologists and have them stamp me with EDS, and It was only after having multiple other doctors note EDS in my medical file that I was able to get Aetna to cover the geneticist. I did call and make some threatening/inquiring calls about what recourse I would have against Aetna if I were to Die due to something that could have been otherwise prevented or found through testing that the patient was requesting anyway. (yes, I was very overdramatic considering my form of EDS, but feel justified when someone is trying to weasel out of diagnosing a patient in order to save a few bucks.) It would have been out of network, but they had to cover it 100% because I demonstrated 'medical need' and showed that if i was later found to have a disease that could have been treated had they approved the testing, that would leave them in an actionable position. I was able to go to the geneticist, and although she gave me a formal diagnosis, she said that the type of EDS my family has doesn't have a blood marker. I already had several other family members positively diagnosed, so I am not sure how much pull that had with Aetna's approving the testing or the diagnosis in my case. I am still awaiting my first decision from Social Security now that I am unable to work (I made it to 35!!), but am expecting to have to reapply a few times with an attorney from what most of these forums are saying. A no cost legal consult on ERESA law might be worth while so that you make threats that you know you have a chance of backing up if it comes to that with your insurance company. Best of luck, and hope this helps.

-Joshseds

My docotors told me that it is 100% medical necessity that I get the testing and could potentially be life or death without the testing. My insurance is telling me that because I am not under the age of 21 (I turn 25 in September) or pregnant they can't and will not cover the testing even though they gave me a prior authorization. My question is: if it is genetic and all my problems started before I was 21 how are they magically going to disappear because I turned 21? I fell that with that whole 21 years or younger and/or pregnant that I am being discriminated against by my insurance. If you think about it, insurance companies aren't supposed to discriminate based off age, race or gender but this benefit rule is doing just that.

Do you think it would be worth writing a letter to the insurance company outlining that this rule is discrimination & that the condition is genetic, meaning not one that just starts at any age? Its not my fault that most doctors haven't even hear of EDS and when you tell them about it they respond "What't that?" I just graduated college, am living on disability because I am too weak to work and the genetic testing costs more than I make/get in a year.

I really wish I could take my insurance to court to get them to pay for the testing, but I have Medicare & Medicaid which means I can't do that because they don't have to follow the same regulations as other insurance companies.

Hello LWiz,

I am glad to hear that you were able to get into the geneticist. I do not understand what is being refused to be covered by your insurance company, and what your goal is to do with it. I do think I might be able to help if I better understand the aim. If your geneticist said you have EDS, have him/her put it in writing. That would be your 'formal diagnosis' that you can use for SSDI applications, disability claims, ect. I am fairly new to this myself (The EDS part, not the insurance part), but I have heard that there are some forms of EDS that have blood markers, and some that do not. When I went into my geneticist, I let her know that the form of EDS that several family members are diagnosed with, we were told we didn't have a genetic blood marker for. I don't remember for sure if they just didn't draw blood, or if they did and I didn't have the marker, but either way I had the geneticist put it in writing that I have EDS. I've been using that. If your geneticist documents that you have EDS with other vascular components, are you wanting to go to a cardiologist to get you heart checked, get time off of work because of dislocations, or have another body part of concern get looked into further?
The way I understood it, getting the geneticist to document you have EDS is the hard part. Some geneticist won't tell you that you have EDS without genetic blood testing because EDS can be so serious and costly to insurance companies. I figured I got lucky that my body was in bad enough shape that my geneticist could tell by looking at me that I had it. If your geneticist has already said you have EDS, it sounds like you won the hard part of the battle already?!

Darn. Sorry, LWiz. The reply I just wrote was for the orig post from 6-12-15. I see the updated entry from you on 8-11-15. My bad. I'm new to this stuff. sorry.

My question would still be would it be possible to have the geneticist that you saw put it in writing without a blood test of any type that you have EDS?

My knowledge with dealing with the insurance companies is more related to Aetna, Blue Cross Blue Shield, UHC, ect. I am not yet familiar with the different rules that medicare have to follow as far as what form of diagnosis they are allowed to accept from your geneticist.
Writing a letter certainly won't hurt if you remember that you can't more flies with honey. Nobody wants to help someone playing the 'poor me role' and looking for a handout. You being in a situation where you are a college student where these symptoms are just now getting properly diagnosed and could be potentially life altering is Not asking for a handout at all. I think people will respond to your plea and sympathize with your struggle if you stay patient and keep reaching out.

For now, if you haven't already, I would contact the geneticist and request a copy of the season/visit notes from your date of visit. If the doc wrote EDS in his/her notes, its somewhere we can start.

My team does not want to put it into writing without the genetic testing because they thing I may have one of the more rare combined forms. They mentioned they thought they may see some genetic markers come back they are unfamiliar with. They said the testing is very important so we know for sure what exactly we are dealing with. They don't want to just put something into writing without knowing for sure. They said the genetic testing will help guide them so they know how to best manage my condition. They forms they think I have do have genetic markers.

As far as SSDI and all of that goes I am already receiving full benefits. That is why I am on Medicare/Medicaid. They need a formal diagnosis to help fight for more physical therapy. I maxed out my PT visits for the year in a month, but I need ongoing therapy. With the diagnosis we may be able to get them to remove the max visits allowed per year. They also need the genetic test to know how serious my condition is. I show a lot of warning signs as far as vascular EDS is concerned and so they really need to know for sure since it can limit my life expectancy.

I understand now. I am at the stages where I am still on a Long Term Disability Leave from my work that I am afraid will turn into a permanent disability. I am 35, and I think that part of the reason I haven't had more dislocations earlier is because of the types of physical exercises I was doing on a regular basis most of my life. Do you have free access to a pool? Do you have access to any of the same kinds of exercise equipment that you were using at the physical therapy facilities that you can try using at home? What kind of exercises where they having you do the last time you were in? A lot of those elastic bands you can buy for pretty cheap off of eBay and do a ton of safe exercises in your living room.

I have found swimming to be very helpful because of the full ranges of motion, and I feel safe doing them in such a weightless feeling environment that is easier on the joints. Static isometrics can help build tendon and ligament strength over time. I was forced into Tai Chi as a teenager, and have stuck with it since because I have found that it has made a big difference on my knees, hips, and ankles especially.

If you don't mind me asking, how were you able to get the SSDI granted without having the geneticist put the EDS diagnosis in writing? If it was for something unrelated, never mind. If you got granted for EDS without geneticist diagnosis, that could be useful information for my family. My SSDI representative basically told me that having EDS diagnosed in my medical file by my primary care physician, a rheumatologist, and a pediatrist didn't really carry enough weight on their own. I was told that I basically had to have a geneticist put it in writing for me in order to have any chance of getting SSDI. Each of my cousins that have EDS and got approved for SSDI said that getting the geneticist to sign off was the hardest part of their process too, but my understanding is that we didn't have a blood marker anyway. I am not sure if I got really lucky with my geneticist, but she was willing to put in writing that I had EDS I, EDS III, and EDS VI. I am awaiting an insurance approval for an artificial disc replacement in my spine so that I can restart physical therapy. Part of my long term disability required me to file for SSDI, but I haven't received a decision from them yet. From what I have read on other EDS forums, you are usually denied several times before getting approved.

If you could provide any insight on how I might be able to speed up the process of getting approved for the SSDI, I would be grateful. If you are not able to get approved for more PT in the immediate future, and depending on how mobile you still are, there are several areas that have free Tai Chi, Qi Gong, groups that meet in public parks or no impact exercises on youtube that can be a substitute at least. Hope this helps.

I got SSDI as medically needy. I also have a primary immune deficiency. My doctors determined that I was not able to both work and attend college. I had 14 joint surgeris within a 5 year period.

I no longer swim. My shoulders clunk out of place with every stroke despite the 4 surgeries I have had to tighten them up. My joints are so loose that I wake up with them out of place, and unable to feel my hands multiple times each night.

I have been in PT for 11 years now. My PT works with me outside of the clinic because my insurance will only cover about a month worth of PT each year if I only go 2x each week. I easily spend 2+ hours on my PT exercises everyday.

As far as SSDI I actually started out on SSI and after 2 years it automatically switched over to SSDI because they determined I was still disabled. When I applied I went to the SSA office and did it in person. We literally submitted all records including a note from psyc saying how I was at risk for worsening depression. When I got it I had also been in hospital 8 times over a 3 month period.