Question For Those With Eds

[Guest Julia59]

Hi---I hope you are all having some good days..........

I have just recently had a call from someone who has EDS. The person who called me had some questions about the support group, and we also talked about EDS. She told me about Cincinnati Children's Hospital----and an EDs specialist who works there. They actually have an EDS clinic.

http://www.cincinnatichildrens.org/svc/alp...ent/marfan-eds/

Anyway, I was given a clinical diagnosis of EDS/joint hyper mobile type by The Chiari Insiitute in NY---and by a physical therapist MD at the Cleveland Clinic. After reading all the diagnostic criteria, I'm not sure how well I fit into this diagnosis. There is NO DOUBT that I'm hyper mobile----and I even subluxate joints, and lislocated my right shoulder blade. My fingers bend back pretty far, by my thumbs don't completely touch my wrists. My left on used to, but after demonstrating this to a physician I injured something in my wrist, and now can't pull it down far at all. I would say I fit about 3/4 of the criteria, but that is just a guess on my part.

I just want to be seen by an EDS expert to see what type I have if any. I need to know this before any future surgeries, especially of my neck/cranial area.

Do you think I'm doing the right thing by going to a specialist?

Have any of you heard of this EDS clinic before?

Anyone who is diagnosed with EDS---do you feel a terrible gravity pull when standing for more then a few minutes?

Do you notice your OI symptoms getting worse as the day wears on. the more you do physically---the worse your pain and POTS symptoms increase.

Popping jaw, shoulders, shoulder blades in your back, feeling of unstable neck, hips, and other joints?

Very flexable in joints-------but don't necessarily have more then 10 degree hyperextension of elbows/knees? I don't really know this, but I do have problems in the elbows, and most recently the knees?

I have talked with some of my POTS friends, and they seem to think I fit the profile, but I'm just curious on what an expert in EDS would think or say...............

Thanks for reading.................

Julie :0)

[Lukkychrm42]

I've never heard of a clinic- but it might be interesting! But might it be more for the other types of EDS, and those actually having the identifiable gene?

As far as the gravity goes, when I stand, I can hear/feel the blood draining from my head, and generally heading for the floor.

I popand subluxate all over the place. Yesterday I was babysitting, and the girl was pulling on my arm, and I told her to stop, and she did when she heard the pop!

I don't really notice a connection between being more achy and having worse POTS symptoms, though. Though the achiness does vary day to day, as do the POTS symptoms.

I'm sure you know what's included in the Beighton score, and I'm not sure why some joints are included and others aren't... I guess if neither elbow or knee goes 190 degrees or beyond, but the other joints fit, that's still technically enough (5/9) to warrant a dx of HEDS?

I saw the video from the Chiari Institute that suggested the connection between Chiari and EDS, and they demonstrated the woman's hypermobility, so I guess I wouldn't doubt their understanding of EDS, so I would think that if they dx'd you with HEDS, then they probably know what they're talking about.

As far as seeing a geneticist, if you've already been dx'd, then it might be good, if you have any reason to suspect the vascular type?

If you're having surgeries for the Chiari, there can be complications particularly with the anaesthesia, but as you know there can also be some for POTS patients as well, so it seems like they could use a sort of universal precaution mindset for you, treating you as if you do have it.

Other than that, I'm obviously not an EDS expert, especially being diagnosed less than 2 months ago, but I think it could be worth hearing what the clinic has to say- especially if they're working on any sort of treatments for it.

Good luck!

[Guest Julia59]

Thanks Lukkychrm42,

I spoke with Erin M Miller, M.S. Genetic Counselor, Division of Human Genetics at Cincinnati Childrens Hospital-----EDS Clinic yesterday morning. She helped me answer a few questions, and said that it would be worth it to come there and have an evaluation. I told her my symptoms, and about my hyper mobility, and she thought I was making the right decision to come there.

We'll see how things come out. It will be interesting------It's about a 3 hour exam......

Marfan / Ehlers-Danlos Syndrome Clinic

"Clinic Visit

Each new patient in the Marfan Syndrome / Ehlers-Danlos Syndrome Clinic at Cincinnati Children's Hospital Medical Center is evaluated by a medical geneticist, genetic counselor and cardiologist at the time of their clinic appointment. A comprehensive family history and past medical history are obtained.

Each patient will also have an echocardiogram either before, or the day of, the clinic visit. An evaluation by an ophthalmologist, orthopedist and / or other specialist may be recommended. Once the correct diagnosis is established, a management plan is implemented and genetic counseling is provided to the patient and family.

Due to the involvement of echosonography, genetics and cardiology, please allow up to 3 hours for a clinic visit.

Individuals may choose to wear gym shorts and / or a sports bra during the physical exam. "

This would surely rule in or out EDS-----------------It's hard to tell if any of my brothers have EDS. My brother Joe has hyper extended knees, elbows----and the rest of my family on my Mom's side is fairly flexable. My nephew David is surely hyper mobile. My brother Joe, and nephew David show mild ANS dysfunction----it's hard to tell if it's a panic disorder or dysautonomia, but both have issues with racing heart.

My younger brother Mike also has panic attacks---he's been on an anti-depressants for years. I have three brothers---and no sisters. My Dad's mother was sick with something for years----but they never found out what it was---they thought it may be some kind of blood disease, she died when my Dad was only 15.

I have no idea if there is any genetic connection in our family---that is why I'm wondering if I even have EDS. It sure feels like it with everthing so unstable and loose---and my shoulder blade dislocating-----and other body parts subluxate.........blood pooling ect.

I guess I should move on---eh------------thanks again......

Julie :0)

[MotleyLori]

Julia,

I was seen there by Dr Wenstrup and I have HEDS and POTS. You should find the visit worth the time and money, as they at least understood my symptoms and were the first doctors that could tell me before I told them what some of them were : )

Aside from that though, I did not learn anything that helped me deal with my pain, fatigue and heart rate issues, so I am still working thru these. EDS is a journey is all I can say, one day at a time.

What I do believe though is that when we learn what we have (EDS) it enables our children to know decades before we learned and therefore they can take steps earlier in life to protect their joints, understand the need for sleep, proper nutrition, exercise etc. I did not know until I was 42 y.o. why I had so many strange problems and I chose to work as a nurse, lived a very physcically demanding life and now have arthritis and pain to contend with. Not to say I would not have it anyway, but I could have lived a little more "sedately" perhaps.

Hope you find them helpful! It is kind of interesting checking in to the childrens hospital as an adult.

Lori

[Guest Julia59]

Thanks Lori,

It will be an interesting visit for sure. I found out that you can get considerable fatigue from EDS------I didn't know that. The pain has not been much of an issue until recently---about the last year or so. I have always had pain, but the fatigue, heart rate issues----and digestive issues were always more of an issue.

Now the fatigue is so bad that I have trouble just sitting up on some days. Tonight we went for a ride to the other side of town---about a 20 minute ride. I asked my husband to stop at JC Penny so I could get my shampoo and hair spray. He took me right up to the door, and the salon is right near the door. I went in and looked for about 10 minutes at the most. I was ready to knock the people down in my way to the cash register----I felt mad and rude, I didn't want to pass out in front of everyone. I quickly paid for my stuff and left. My husband picked me up at the door, and my legs were shaking when I sat down. For some reason when I get so bad like that---I get MAD/Bitter. I just can't picture myself in a wheel chair or scooter yet----that one is real hard to face----I'm just not there yet.......

We went to Starbucks where my Son is a manager to say hi----when I got in there I felt so fluish---and like the blood was draing out of me. My son asked me what was wrong, then said never mind---I already know. He wasn't being mean---he just knows how it is. I get so fluish all over, all the time. MY trunk part of my body hurts the most, and I have a lot of problems with my shoulders---and neck/cranial area. I have noticed my ankles subluxate more lately---or maybe it's the foot near my ankle. You know, I always thought this stuff was just too crazy to be true, but the more I read, and the more people I meet who have EDS---I'm finding a lot more out about the different issues they have, and that I have some of the same issues.

My PCPs office said they were faxing the referral to Dr. Wenstrups office Friday------The genetic counselor said I shouldn't have to wait more then two months to get in for an appointment. I'll have to make my appointment for the neurologist at TCI--(Dr. Kula) for a later date, because I want to be checked for the EDS issues first. I'm scheduled for early August---I doubt I'll get into Dr. Wenstrup before that.

I'm open minded---and willing to do whatever I can to get help with this. The pain is getting a lot worse lately---and the fatigue as well. It's really quite crippling----the combination of it all.

Julie :0)