Feeling let down by doctors

[bree]

Hi Teaspoon

I really sympathise with you, it took me over 7 years of actively seeking answers and numerous doctors to get a proper diagnosis. Firstly I would make a formal complaint about this doctor telling you that you should be glad its not ra, is unhelpful and patrionising. I would then go to your GP or another gp if you are not getting anywhere, and say that you have made a formal complaint and you want to be referred to another hospital. I know you are entitled to do this in england, am not sure if the rules are different in scotland. Always make a list of things you want to say to your gp/dr and be firm but calm and polite. Can you bring a family member or friend for support.

Have you got an offical diagnosis of HMS and are just looking for more support?. Tell your gp why you want to see a specialist in HMS, how its affecting you and what you need help with. I think there be a list on here of doctors who specialise in HMS and they look at the whole body system which is what we need, as you can't control the pain if your so dizzy/sick that you can't exercise.

Don't give up. I had a really bad experince with a vile rheumy doctor and he made me so angry and determined that I made a formal complaint and asked GP to refer me to another hospital. From then on I was taking a lot more seriously. Although it did take a year to see a specialist in HMS, it was worth it. So yeah sometimes you do need to make some noise, don't let yourself be bullied.

Best of luck

[gila]

BIG hug teaspoon!
grrrhhh... it might just be 'normal' fainting- but what's 'abnormal' fainting? and it sure ISN'T normal to faint up to 10 times a day!!!!
(or am I blind to all these people on the street regularly keeling over??? )

and yep I'd also say DO complain/raise these issues with whoever you can- but... the evil thing is we usually are in these 'must complain' situations when we feel v v v lousy/have no energy/not a lot of brain capacity= it's extra extra hard to do this- so massive hug for you!

in the meantime I'd say do check out sites like stars.org.uk or dinet.org - and see which self help measures you might be able to employ.
xxg

[teaspoon]

thanks

i'm having problems with the self-help advice, which is another issue the doctor can't get his head around - compression stockings sublux my knees and overheat me, and i'm finding getting enough salt in really difficult (i'm finding that i need about 15g before it makes a significant difference, and i can't cram it all in!) - i'm seeing my cardiologist again in november, and they mentioned midodrine before, so i think i'll be pushing for that as an option.

i think i'm going to ask someone else to come to my GP with me and help me tell him what i need. i'm very assertive right up until the point that he says 'no', and then i fall apart. i think that i'm maybe not managing to communicate well enough that i need him to help me coordinate my care, because at the moment it's a complete mess, and there's no plan. but he can't do that unless he reads up the basics, which he's consistently failed to do, so i don't know!

thanks for letting me vent guys, hugs all round xx

[bree]

Hey teaspoon

I asked for help with pals with making my formal complaint, they helped me type it up and my sister helped too. So maybe someone could help you either write a complaint or else write a letter to Gp.

As for the other side I have found pacing myself as made a huge difference and have you tried the electrolyte drinks lucozade do a salt one sugar ones made me worse. Apparently support underwear is meant to help if you find stockings a nightmare, worth a try just think of Bridget Jones

Good luck with everything, hope you get some help soon.

[teaspoon]

ooh, good suggestions bree *goes to search for giant pants to dance around in*!

[Bo1970]

Check out what other people says about your surgery.
http://www.nhs.uk
Type in your GP's postcode and click on 'Find GP practices'. You'll get an awful lot of information about doctors, surgery performance, patients feedbacks etc

[Bo1970]

I don't know about everyone but I welcome this news. At last, I can re-register with my previous GP if they opt-in.
http://www.bbc.co.uk/news/uk-england-16364289

[madmum]

Having had major problems with the local ortho bods and management of the local hospital I am sueing them for medical negligence. Doing no win no fee,also doing it for my son.

[ciderpig122]

My daughter, aged 15 has ehler danlos, I know this as it took me 11 years of hell to self diagnose and get a referral to prof G so I know the symptoms as you all do too

I also have a sleep disorder, my daughter has all the signs and at year 10 has been put forward to sit GCSEs a year early, starting in 2 weeks.

We, after months of going back and forth to our GP he referred us to a paediatrician we had our 1st appointment
And the fact I haven't been arrested for stabbing the doctor in the eye with a bic biro is a miracle

She basically said that my daughter is clearly not hypermobile, despite being as bendy as me and who's hips are dislocating daily (resulting in me half crippled popping them back) and the fact she isn't sleeping well is because I have forced ehler danlos and sleep disorders down her throat and she's a nervous wreck, my daughter was bobbing her legs in the appointment as I do to keep awake!!!!! Not as a result of nerves, the paediatrician has referred her to the same physio that discharged me last month as they felt ill equipped to deal with me and said stanmore was my best option after 4 weeks of hellish pain

I'm down, now very down, hanging on by a thread so am considering paying to go to Prof G and the sleep clinic, has anyone else experienced muck like this, it's ok being I'll for 11 years When it s you but not your kids, it's horse muck and I'm not having ir

[nemonie]

That doc sounds like a complete moron. I'd advise you to put in a complaint via the PALS service at the hospital where they are located.
I ended up having to pay to see Prof G as the rheumy I saw locally was pretty useless.

Nemonie

[madmum]

ciderpig my son was not diagnosed from 4 til9 at our local hospital. I took him away to a different hospital and within 4 visits he was and has had excellent care from a wonderful rheumatologist. He also now gets great help from their orthotics and physio departments. Our local hospital missed me from 2001 to 2011. They have also misdiagnosed bone injuries and we are going 53 miles away to get diagnosis and help. That is why I am sueing.

[ciderpig122]

madmum...........thats very interesting, I was misdiagnosed for 11 years too! would I be able to PM you re how you are proceeding?

Thanks in advance

Caz

[mrsc2b]

I'm feeling a little let down at the moment folks and could do with some advice. I have several problems including Pseudo Arthrosis in my Sacrum along with Lordosis, thoracic Outlet Syndrome and Hypermobility.
My hands are getting worse and my back is so painful that even morphine is not helping me cope.
I've been referred to pain management in Leeds. I had 2 lots of diagnostic steroid injections in my spine which didn't work. Now they can't decide what is wrong and wont continue to investigate as it means going into the disks.
I just need some answers. What is causing all the pain?
Obviously I understand you wont be able to tell - I'm venting mainly.....
Thanks

[Tilly22]

Hi everyone, this is my first post of 2012, been quite busy so happy new year to you all !

Feeling very low at the moment! Just to run over a few things, was diagnosed with HMS in 2008 by a local physio referred to by my doc, went to a few physio sessions then everything stopped. Doc has prescribed me with Co-Codamol since then basically. Visited my GP around September 2011 as I feel tablets aren't helping me and wanted to look at other alternatives to help me manage better basically. He actually said to me that he didn't know that I had been diagnosed with HMS, that he was giving me tablets for "back pain" (for three years, bearing in mind I was only 16 when diagnosed) and that no report has ever been sent over to say I have HMS.
After me being left seriously red faced, he then stated, you can't have Hypermobility as it doesn't cause pain.. !
I was then referred to a rheumatologist at my local hospital and was back at the start getting a formal diagnosis, I was 100% sure it was HMS I've been suffering with and the rheumy confirmed this and sent the report over to my dilusional GP and that it was now in my GP's hands. Now since then, which was before Christmas, I've been contacted my a different GP from my surgery, (wasn't happy with this but then again I'm guessing my own GP is too embarrased to face me after completely doubting me) who stated she had seen the report and what would I like her to do next... me getting more frustrated said well what do you recommend you are the DOCTOR. She then said she'd look at physio and acupuncture and get in touch, basically stating there's nothing she can do.
Now that was well over two months, maybe three months ago and I've heard nothing from my doctors however they still keep signing my prescription every two weeks for my painkillers. I'm getting soooo annoyed with the way they're dealing with this, I don't even feel like me confronting them will help as they always seem to find a way to make out I'm not suffering and that HMS isn't a big thing and that there's nothing else they can do. I've seen many of you on here talking about specialist clinics which I'm thinking about researching, I'm even starting to doubt myself now after hearing the doctors but deep down I know my Hypermobility is an issue and something needs doing about.
Can any of you recommend what to do next, I'm literally tearing my hair out, I feel so helpless but really want to speak to a professional that does understand and can help, I'm now certain my GP can't unfortunately !
Sorry for ranting everyone, but only you guys understand!

Thanks so much, T x

[Kattykins]

I really sympathise with how you feel - I am sure most of us have "been there"!

My GP is wonderful and very supportive but she always asks me 'what can I do?' I feel that she is acknowledging that I probably know as much (if not more) about my condition as she does and that only I can know what particular problems I am having.

Write a list of what is troubling you - pain, any other symptoms. Explain that the pills aren't helping the pain and that the hospital suggested acupuncture/physio but you haven't heard anything. Perhaps she can speed things up a bit.
Be very clear about what is wrong and what you need. Sometimes I just go in and say 'I hurt!' And then we can review my painkillers. Sometimes I will be more specific and will end up with new splints or physio or whatever.

Have a look through the forum here and get yourself educated. It will help you to explain yourself better and to understand what is being offered!

And try not to get too upset. This is a very long and slow journey we are on! It will take time but you will get sorted out!