Meeting EDS specialist in 3 hours, does anyone know what to expect?

[SchrodingersMew]

Just that really, I have been on his waiting list for well over a year and no idea what to expect.

This is basically to confirm EDS as my Rheum' doesn't know too much about it.

What will he do? Anything I should ask?

Thanks. :)

No advice to add, but I am attempting to get my DD and DS2 referred for dx of EDS, they already hold dx of Hypermobility Syndrome, as do I, and my 21yo Dbro, and my mother...

We are all sure it is EDS, but because we ALL have different surnames to each other, and my Dbro and Mother were dxd under a different Health Authority (now swallowed up by the PCT I and my DC's are under), we are hoping to make some headway.

How did your appointment go?

Hi, sorry I missed your post earlier. Hope the appointment went well.

My ds2 has hypermobility syndrome and we are getting nowhere getting past the community paed's dx of 'lax ligaments'.

Physio agree that it's BJHS and therefore EDS III, but say it's not worth the fight in our NHS pct, as we won't get anyone to acknowledge the connection, let alone that ds2 has it.

Anyway, what I came on to post was a link to the long-running EDS thread over on MNSN here. There are some very knowledgeable people over there and both parents and children who have differing types of EDS.

Hey Couthy and Moose, I got a diagnosis of EDS III with no doubt. :o So glad, it has taken years.

Couthy You would think after all of you having a dx of HMS they would take you more seriously!

Moose It's ridiculous you are not even getting past the community pead. :( Thanks for the link, I have been on before but can never keep up with long threads, I will give it another go though. :)

Thank you both for the replies btw, it has taken me since age 10 to get to this appointment I really do hope it doesn't take that long for your DC's, my Dr's just kept fobbing me off and one even told me when I suggested EDS that I wasn't "tall and skinny enough" .
Keep on at physio though, I have only just started and already it has made a big difference, especially because they noticed I have flat feet!

Well done you :) Hope it gets you the treatment to help!

Too many of us in this position - I got my 'lax ligament' diagnosis at 7 in about 89

I ended up at a specialist in 2006, who was convinced I only have shallow shoulder and hip joints and that my pain was MH related (I do have a history of MH problems, but I have to wonder how much my chronic pain through childhood and teen years had to do with that) He got a bit frustrated when I met some of the marfanoid criteria in my hands along with local anaesthetic probs and obvious streachy skin with cigarette paper scarring. They were going to cure me with an SSRI antidepressant.

So I still have BJHMS and no consultant.

Trickle that's outrageous, but sadly all too common.

Ds's paed was sent a comprehensive family history that clearly indicated EDS running through the maternal line and he completely ignored it, putting on the report that Mum and Grandma had some problems when younger but are no longer affected - which was blatantly untrue. In fact my mum is in for surgery today to treat a chronic subluxed shoulder that has caused severe intra-joint cysts and bursitis, torn ligaments and a host of other problems. I am also currently laid up with a broken toe caused by an ankle inversion, identical to the one I did to the other foot less than two years ago, along with a humdinging headache caused by a subluxed neck vertebrae.

As the physio and I both said independently, lax ligaments is a symptom - not a diagnosis.

I honestly think the only way to get a proper EDS diagnosis in this country is via private appointment with Professor Graham, even GOSH are refusing to dx children these days and they are supposed to be the paediatric specialist centre for EDS! I have also read that in many cases, their treatment plans for children who have EDS are often also wholly inappropriate and downright cruel, pushing children to exercise beyond their pain barriers without their parents present etc.

Personally, I am trying to find out if EDS can cause vascular-type brain lesions. As I have lots of them. Neuro is going with a working dx of MS at the moment, but says the lesions don't really fit the MS criteria properly, being too vascular in appearance. I honestly don't know who to ask, without being labelled neurotic.

Trickle and Moose, that's awful. :(
I feel really bad now, I hope people start taking you seriously. I only got this appointment with the Proffessor out of sheer luck because my Rheum didn't know enough about EDS to diagnose it. She actually wrote in my notes "very minor hypermobility in hands only" so no one would take me seriously.

The Prof the other day said I scored 8 out of 9 in the Beighton score just losing a point for 1 knee and that I am extremely hypermobile and that he will be writing "a big long letter" to my Drs. :o

As I said, my GP told me I couldn't have EDS because I wasn't tall and skinny.

Have also had in the past them telling me it was in my head, GP actually sent me to a homeopathy person who brought out a plant and said "this is you, you have to nurture it for it to grow" and said that my pain in my shoulders and back was me "carrying my stress and worries on my back" WTF!? :o

What are these people on, seriously!?

Moose I really hope you manage to figure out the lesions, that must be very worrying. :(

Trickle Exactly the same story as me really, anasthetic just doesn't work, I have very stretchy skin, papery scars etc and they tried to just give me amitripyline and said that would make it much better.

No idea how they though an SSRI would stop my joints continually popping out to the point physio thinks she can't fix my thumbs and she's brilliant, apparently I will need the wires but because my skin doesn't hold stitches it's a bit of a dillemma. :(

Anyhoo, I digress, apologies about the long ranty post.

Moose The Prof' I had spoken to was eager to talk about my DS and asking about his joints. He's very good, so if anyone is in Scotland I reccommend trying to get refferred to Prof' ferral.

That's great Schrodinger. It's good to hear there are a few good professionals out there relating to this area.

Unfortunately I am a loooong way from Scotland.

Is there no specialists you could get referred to in your area? It's a long wait here too as he only sees 3 people a month!

moose that's terrible, I hope they sort themselves out with regard to your brain, sounds very worrying.

Don't you dare feel bad schrodinger the more people they dx correctly the more they will have to fund treatment and the less they will be abel to ignore us.

7 years + pregnancy later I'm a full time wheelchair user - I did an inapropriate job, and pushed through the pain so much I seem to have permanently buggered my hips. No one ever told me that was even possible, all I've ever heard is don't stop, don't rest, push through the pain or you'll loose function Pah! I'm very very lucky in that I have the worlds most amazing phisio - you couldn't pay me to go to one of the specialist treatment centers if it meant I had to give up seeing her - she is fab and if it hurts works out why and then helps me solve the problem, she is a diamond.

Just to point out amytriptaline isn't an SSRI - it's an older class of anti-depressant drug that used at low doses helps with some types of pain and with sleep. I'm not saying they weren't trying to fob you off, it can be part of a good range of treatments. I'm allergic to it, so they tried to give me an SSRI which has no proven benefit for pain relief other than if the pain is caused by depression - my pain like yours is caused by subluxion, it just proved how little they had listened to me and how much contempt they had for informed consent.

That's odd. I only got your second post showing up, not your first Scrodinger and now I can see both.

I am another one that anaesthetic doesn't work for. When I had 2 cysts removed from my neck they injected me 6 times and then lost patience and said I was imagining it when I said I could still feel it. I pointed out that as I actually couldn't see what they were doing - how could I know when they were cutting me - then they gave me another jab. That also didn't work, so ended up having the op with no pain relief. Similar story with dentists and the epidural I had with ds1 (well that half worked ). Oh and the local they give you for stitching up after giving birth. The midwife was when I refused it last time, she just wouldn't believe me that there was no point because it doesn't work.

Ds2 is the same. They said he was making a fuss when he was in hospital with pneumonia and got hysterical about them putting a new cannula in. Three different registrars tried, then they brought in a phlebotomist who froze his arm rather than using emla cream and he was fine, although terrified. Poor boy was only four and seriously ill at the time and he now has a serious needle phobia as a result.

We've had similar problems when he's needed blood taken. Emla local anaesthetic cream just doesn't work on him and of course it's exacerbated by collapsing veins. So they go, 'oo I've found a nice juicy vein, this won't take a second' then they stick in the needle and it collapses. So, they do the whole jiggle the needle about a few times, then restick him whilst looking really confused. I always ask for the senior phlebotomist for him now, even if it means a longer wait. I am the same with blood tests etc. Last time they made me stand with my hand under a burning hot tap for ten minutes then took it from the back of my hand using a butterfly? needle.

Trickle that's awful. It's heartbreaking to hear all the stories of how people have been ignored or worse when they are suffering so much and sadly I'm hearing more and more of them all the time. I just wish I knew what to do to make sure ds2 doesn't end up another one (he scores 8 out of 9 - the only thing he can't do is put his hands flat on the floor). Sadly dd (3 years old) is also showing signs, her legs in particular bed backwards quite alarmingly.

My mum will be having her op now. I really hope they manage to sort her shoulder out because she's been in agony for over and year and kept being told it was a rotator cuff injury. They also wouldn't believe how much pain she was in because she couldn't identify a distinct accident/incident when the injury occurred. She has had to go private to the same ortho who replaced her knee and hip and fixed her foot (she had her toe wired straight, but the stitches ripped through and the wire slipped out! ). He says he doesn't know what's up with her, but she doesn't respond well to anaesthesia, doesn't heal well and her soft tissue reaction to surgery is extremely unusual and nothing he's ever come across in nearly 40 years. She needs another knee and hip, but the ops and post op healing is so traumatic she can't face it - she also still feels pain all around both prosthetic joints. She won't go to the GP to be referred for an EDS dx though because she's been ignored and belittled about her pain all her life. She did consider going to Prof G, but her insurance wouldn't cover it.

Trickle That's horrible. :( They basically said the same to me too, just to keep exercising and that the more I do it the more it will help with the pain, constantly telling me to go swimming and it's the best thing I can do. Physio and Prof' have both now told me swimming is a absaloute worst thing I can do.

Prof' got the GP to give me a prescription for Versatis patches, would that possible help you? They are local anasthetic patches and he explained that because you can absorb much more through the skin than having it injected a lot of people with EDS that are really insensitive to anasthetics find they work better.

Moose That is really awful, how dare they treat a little one like that. :( They seriously don't think when it comes to shoving needles in people. They do the same to me with the wiggling it and lifting it etc it is seriously agony and then the same the veins just collapse. Always act all holier than thou as well when I tell them certain veins just don't give out anything and just collapse but I get the "well it's very bouncy, very good vein it will work" then they stab and wiggle and it collapses anyway.

You are doing the right thing asking for the phlebotomist every time, I will only let one of my GP's who is also an anaestnatist or the phlebotomist, also only ever from the hand with a butterfly needle too or with a needle and syringe as this works much better becuase the pressure is lower with such fragile veins.

Also feel very sorry for your poor DM. :( It's bloody crap that people end of feeling like it is better to not go and look for dx or treatment, surely EDS/HMS is common enough for there to be some training in spotting it?

Sorry, had to make this a quick one but will come back and reply a bit more later.

x