Feeling let down by doctors

[Fiona-Jane]

i'm sorry you got treated like this!

this is the reason i've spent so long on my anatomy etc cos hospital isnt an option for me around here- i get the same treatment as you did, but at all the hospitals. they tell me cos it's a problem that happens often i have to see my gp about it. but gp just sends me to hospital so i end up shunted between the two until the gp goes home. sooo much easier if i fix it myself. but taken me years to know the anatomy of my feet and ankles well enough to relocate the trickey ones when i'm blind from the agony. been working on them since i was 6 years old and only now able to do it by instinct.


it used to drive me mad not having anywhere to go for treatment but it's not so bad now i've got good splints on my wrist and ankles, it dosen't dislocate as often (just at night when i sleepwalk but if i'm having a bad run of wandering i'm naughty and sleep with the brace on ). maybe it's a good idea to get a brace for your ankle? getting mine has meant i dont struggle with the dislocations quite as often which has helped ease the constant pain that was in due to all the unhealed sprains and torn muscle. and i'm able to do physio on it better now cos it works better now some of the damage has healed so its a lot stronger. still get subluxes in the brace but they're easily fixed


hope you're not feeling too down about it xx it's horrible when it happens for the first time- made me feel really bad!


fi xx

[loosebones]

Well I've got to give the nurse her due...she's just rung to see how I am. I'm still furious with the receptionist though.

[Julie]

I think i have a classic

The rheumatologist i saw this last week used Wikipedia as a tool to diagnose EDS.

[vh86]

That's impressive. I had my GP look up HMS on the doctor equivalent of google. To be honest, I rather appreciated his honesty that he didn't know what he was talking about, better than some of the others who just pretend they know it all when they don't have the clue. Like the one who told me that HMS absolutely is not affected by the weather

[loosebones]

What a day! One I don't want ever again.

Yesterdays appt with ankle specialist didn't happen as someone hadn't got the message through so they weren't expecting me and sent me home. I kicked up a bit of a fuss so they booked me an appt at fracture clinic for this morning.

Got there this morning and they were running an hour late (to be expected) but when I was called in I was left in a room for 20mins. Finally the Dr came in and asked what the problem was. His whole attitude was 'couldn't be bothered' 'waste of time'. He didn't examine my ankle, didn't take the backslab off it and basically dismissed me saying that he couldn't see a problem. I explained that I was meant to have seen the specialist yesterday and he disappeared shutting the door. I was then left in the room again for another 20 mins. He then came back and said that he wasn't going to deal with me. Somehow I persuaded him that someone needed to see me and he arranged me to see an ankle specialist this afternoon but I needed to go for lunch and come back.

When called in to see the ankle specialist he instantly stated that it was impossible for the ankle joint to be that unstable even with EDS. His following points were:

- My ankles are not lax/unstable
- It's not possible to dislocate
- I'm not in enough pain
- I'm doing it myself
- I'm holding out of position myself
- Because there is nothing to show on the xrays there is nothing wrong (all xrays taken after manipulation)
- my physio and podiatrist are wrong

He basically called me a liar, said I was making it up, implied that I liked the attention, I was wasting everyone's time and he wont help me. He even said that with pictures shown to him of my ankle dislocated and in severely wrong positions.

I left in floods of tears and it's taken me a couple of hours to stop crying. I'm absolutely gutted and don't know what to do now.

[sheppeyescapee]

Hey LB,

Really sorry you had to go through that! I came across the same problem at our local fracture clinic too. I really hope you can get it sorted soon although don't really know where you go from here. I would definitely complain when you are in the position to do so!!

[mrsc2b]

I have to agree, it is not acceptable to be spoken to this way. I would put a formal complaint in through your PCT and GP. Send as much information about EDS and Hypermobility as possible with copies of letters etc confirming diagnosis. Even get the podiatrist and physio to write a letter to with it all. Do not take this lying down. This is your life they are playing with.
Good Luck
xxx

[Blaadyblah]

Oh god love, one of THOSE doctors.

We say it over and over, I know - but for crying out loud please make a formal complaint about this guy? I'd be tempted to copy that complaint to your Practise Manager and the local PALS team too. Completely out of order. Take some time to recover from the nastiness of it. Absolutely appalling state of affairs. The fact that you're having to chase round the county to try and find a medic that will even look at the ankle is absolutely ridiculous.

[evenwen]

If you ever end up in that damned place again, I'm coming with you as back-up. Tis one of the few things I can reach by bus easily and I am NOT impressed with what they have done to you, or anyone else.


Does anybody know if there is a way of getting written proof from someone higher up (who actually knows their a**e from their elbow) that these things CAN and DO happen?

To belittle/dismiss someone when they are in so much pain just because the medic is not as educated as they would like to believe is vile.

You have just tried to get the help you need and be honest about it sweetheart and I really hope you feel a little better soon *hugs*

[Eloise]

I used this article http://www.ncbi.nlm.nih.gov/books/NBK1279/ when my physio didn't believe that hips and SI joints dislocate.

That was definitely "out" of joint LB - you need to make a formal compliant as that is just not on. I really hope you get some help soon. Maybe that doc gets all his medical info from watching casualty and thinks we do things to get morphine!!!! Grrrr it really annoys me - as if we would choose to have this pain! Take care LB.

[Jess]

Ok LB time to PM us all the idoits name for us all to send a letter with pictures of our dislocations!!
Could you try and ring Prof Grahame to see if he can get something sorted for you?

[barkingmad]

I think you need to make a formal complaint LB.

that is disgusting, please do feel free to email me the details so I can share them with the MA's/

[teaspoon]

Hey,

I guess this is the right place to post. What makes me sad is that I don't think that anything I'll say is anything like unusual for the rest of you. It doesn't normally get to me, but I'm feeling quite blue today. I was diagnosed by a rheumy who then discharged me in January after telling me that 'at least it's not rheumatoid arthritis'. I've had physio, but was discharged after the 10 weeks before she'd managed to work out what to do with me. I'm on amitriptyline / paracetamol / tramadol, which is not cutting it for pain control, but I'm too scared to talk to my GP about it because last time I did he threatened to stop the tramadol. I saw the OT, but they have no funds to give me anything, so I got one ring splint for one thumb. I've seen a cardiologist because I faint up to 10 times a day, but he refuses to look up POTS, insisting that it's just 'normal' fainting. I can't talk to my GP about the other dysautonomic-type problems that I'm getting, which are completely kicking my bum, or about the gastro issues which are causing huge problems, because he either tells me it's normal, or insists that it's because I'm depressed. I'm so fed up of not being listened to. It's like they forget that between appointments I actually have to live with all this stuff.

I know, I know - I'm just having a blue day and needed to vent

teaspoon

[Rosie]

Hi all

teaspoon, sending you
Have you tried seeing another Dr? Or contacting PALS? It is appauling that you have been told fainting 10 times a day is normal, and you have a right to see someone who can help you. Maybe think about contacting PALS for advice?

Rosie

[teaspoon]

Thanks Rosie

PALS doesn't exist in Scotland so it's a bit different - it's more of a complaints service rather than advice (as far as I understand it), so I don't know if that's the best way to pursue it? It's not that I want to make a complaint, it's that I want someone to listen to me when I tell them what I need. I've tried to get the GP to read even very basic information about HMS/HEDS, but he's not interested. I think if I could get one doctor/physio/nurse to take me seriously, the others might start listening, but as it is they just all send 'oh I suppose she's a bit bendy, but it's mostly in her head' letters to each other.

Grr!