Enough

[new_kinda_freak]

Almost 15 years ago my body started to change. I'd already started puberty and in fact was probably almost finished. But these changes started to disable me. My muscles weakened, my joints became painful, I felt exhausted. My spine started to curve, I struggled to digest food and seemed to always have infections. To begin with my GP thought it was

Comments

[sleepybeccie]

hey hun! have they got a treatment plan for you? i honestly never thought EDS would of even been thought of for you. i'm glad you finally have a diagnosis though! did you have the skin test done? sorry for all the questions xxx

[new_kinda_freak]

It's funny, Esther often said EDS would fit lots of my symptoms but I never followed it up. I asked my GP to send me to Prof G on the off chance, but they were so sure I had it they almost forgot to tell me .. just started talking about treatment and a plan. It turns out I have a fairly severe form with unusual complications like the neuro stuff. I guess that's what stopped people thinking of it. They decided that because it was so clear I had it, they didn't want to do any more tests. I think given I've been through so much, they didn't want to add to that.

Thanks for your message darling x

[lisy_babe]

Glad to hear you're finally diagnosed. I know what it's like on a much smaller scale to finally get diagnosed after getting an APD diagnosis having initially been told that my ears work fine and the reason I struggle to hear is because I'm mad and imagining that I can't hear.

Have you also got a neck/spinal cord thing like Pen causing your neuro symptoms or is that kind of inquiry still pending?

Are you going to start having physio to get your muscles working again? I'm imagining that when MD was on the cards there was a risk it'd do more harm than good, but with crappy collagen muscle strength does more good than harm. Or is that, again, still all futurey?

[new_kinda_freak]

Hey Lisa, thanks for your comment :)

They've not done much research into the neuro-muscular aspect of EDS yet, but there is a known one. It's the do with the way my brain communicates with my muscles, or the lack of the communication as the case is. The spinal cord is and the ligaments that hold muscles to joints are also all made up of collagen, sending messages through that would be difficult. There are several schools of thoughts about how EDS effects muscles, but however it might happen I have that. I've no idea if I have the chari malformation or not, I guess thats possible also. And the final possibility is that I actually have something like MD along side my EDS.

I will be doing physio and hydro, but the consultant said to only really work on protecting my joints. I don't think she thought I would regain any mobility.

Life over the next two years will be an experiment. We'll just have to see what happens!

[prydera]

Just as a note, even more than the "normal" Chiari, what was causing some of my problems (and this is where I suspect you could be having problems) was a combination of cervical vertebrae that subluxate when I do things like turn my head (compressing spinal cord and veins and stuff) and the fact that my head was sitting on my neck at the wrong angle. While part of my head/neck surgery was cutting part of my skull out for the Chiari, the larger bit was repositioning my head and using rods, screws, and some of one of my ribs to fuse C1 & C2 and fake fuse my head to stabilize it in the correct place. I may or may not have to eventually get more of my cervical spine fused eventually, as well (we already know C4/C5 subluxates when I tilt my head forward and back, but it's not severe enough for surgery at the moment). But I no longer have a constant headache and my balance is slightly better, among other things

[lisy_babe]

That's interesting about EDS causing other neuro probs besides neck stuff.

As I'm sure you know OI is a collagen disorder too and a lot of EDS/OI symptoms are the same. I've encountered many people with OI and neuro probs over the years but they're all people with BI (similar to Chiari) and their neuro probs are caused by their C2 poking them in the brain.

[anonymous]

My mouth was actually hanging open (as far as the little beast can) as I read this. Particularly the third paragraph. How DARE anyone speak to you like that? Yes, I accept that hypochondriacs et al exist - I have had experience with them - but to say those things on your first visit with that team? Had you been in and out of their office for years, I'd still be horrified. But your first visit, desperate to know what was happening to your body? It's actually making me cry thinking about it now. I've been emotionally abused and hurt by doctors and other medics, but what was said to you hurt me more.

If people judge you, they are not friends to you. Leave them behind, because you have SO many people who admire and love you. We love everything about you (maybe except EDS because it's caused you such pain). But we know your diagnosis is a good thing. Here's to understanding, treatment, and a new life of belief and help.

Love to you, my dear one xxxx

[new_kinda_freak]

It's been pretty shit if I'm being honest. But I've had amazing people like you around to support me all the way! It's taught me loads, we can't pass over everything I've learned and all the amazing people i've met because of this.

Thank you for all the love x x

[lisy_babe]

From what I've heard about Prof Wessely: That's how he treats all his patients. Can you imagine if he spoke to people with better understood issues than chronic fatigue like that? He'd be struck off in no time.

[new_kinda_freak]

I remember telling me GP I didn't really want to see him because I'd heard he didn't believe in ME as a real impairment. I wonder how different it would be if I'd been switched to a different Dr! People with ME are treated shockingly, if he was treating say people with cancer like this .. he'd be sacked in a second!

[prydera]

Having gone through the 10+ years of symptoms with no diagnosis and doctors trying to all claim I had somataform or conversion disorder, I am with you on the anger. You seem to have the closest reaction to diagnosis to my reaction when I was diagnosed (compared to other people I know); I wonder if that's just something that happens when it takes that long and you spend so much time being told it's mental not physical. I'm no less angry now, although, I don't talk about it much. If I could figure out how to fix it so that no one else goes through the sort of hell that we've been through

[new_kinda_freak]

We will absolutely catch up soon sweetheart, thank you for everything x

Wow

[ext_1130803]

This was heart-breaking, and while I've heard quite a few, one of the worst stories of this kind involving an adult, simply because it went on so long. I'm kind of excited and scared for you, as I imagine life changes a lot after this point, and you have to come to terms with the abuse - because it is abuse, and would be abuse whatever the cause of your symptoms - that you have received.

I know "courage" is a sometimes tricky word, but I think you have demonstrated a great deal of it in getting through all this and coming out the other end without a few suitcases full of bitterness and a hatbox full of hate.

All the best for realising your hopes.