Feeling let down by doctors

[mazza111]

GL are you already under the rheumy? If so maybe it would be better getting a report from him with regards to your condition. However, these reports should all be sent to you GP anyway, especially in this day and age where everything is linked and we're all a number.

[GreenLantern]

mazza111, I'm waiting for my appointment with the rheumy.

[mazza111]

Ah I see, sorry I may have missed that part, so busy at the moment I'm skim reading most things. Have they told you how long you will have to wait for rheumy appointment? We haven't pushed for a referral yet, in the hope that they can fix the main bit first.

When I done Stacey's form I listed her problems and then added the possibility of JHMS. When they called and asked I told them about the knee not staying in place at all these days. It's the one knee that's giving her so many problems. The others pop but are manageable, but the knee. Think she's even contemplated a very sharp axe

[GreenLantern]

mazza111, I have every sympathy for your daughter, my left leg is the worst one too (aside from my hip and then it's my right one) but my left knee is just awful, full and partial dislocations, cracking, clicking, crunching, it doesn't bend a lot of the time and when it does it is so painful! I hope your daughter can get sorted.

I don't know when I am going to see the rheumy, GP sent me a letter saying he was referring me but as of yet I've heard nothing else.

[sarahcoms]

Hi all

I just wanted to share my experience at the hospital today..... I have POTS and was diagnosed with HMS a few weeks ago. Anyway, my eldest son who is 10 has always suffered with knee pain etc, is always tired and has really poor concentration. His joints are also very hypermobile. I figured that as I'm a bendy he probably is HMS too.... He had his first appointment with the consultant today and I was shocked at just how little she knew about the whole thing. Other staff kept referring to her a 'professor' which reassured me at first but upon speaking to her it became apparent that although she is aware of hypermobility, she knew little about all the other issues that can come with it..... She wouldn't link the poor concentration, clumsiness to HMS and asked why we were there if I already knew he was hypermobile.... 'er, he's in pain and needs extra support in school!' was my reply.... she didn't look convinced. He also suffers frequent tummy aches which can be agonising at times. I asked if this may be linked to HMS after having read it may well be and she dismissed me immediately. She was speaking to a student throughout the assessment and explained she was ruling out Marfans and EDS.... I asked if he might have EDS 111 but again she was adamant the HMS and EDS are 2 very different things and would only refer to EDS as a serious life threatening condition.... presumably she was referring to vascular type... she did say that she would refer him to the OT and physiotherapist but I just felt like I was wasting her time. Has anyone else experienced this kind of 'attitude' when being assessed? I'm not sure what I was hoping to achieve from today . I just didn't want my son to get to 30 before he understood why he feels so dreadful sometimes I guess.....

Anyway, thanks for listening to me moan on

Sarah

[xxxxlollypopxxxx]

poppysmum, unfortunately they do.

My dad is a GP and despite having a daughter (me), not to mention 3 of his inlaws with HMS he still believes it's a 'non-condition'. And even after having me calling home in tears with pain, he still doesnt believe that 'being a bit bendy' could possibly be painful or uncomfortable. So I can definitely empathise but you will fnd thats lots of GPs, most of them without any personal or proffessional experience of HMS could believe it to be made up.

There are lots of things you can do though. when i first visited my GP i wasnt taken very seriously, and so when i wnt back i made sure i was armed with photos of all of my deformities and party tricks, and a huge long list of everything that hurts,snaps, crackles and pops, with things that i was most concerned about in red. there was no way that they could fob me off that time, with such damning evidence of th state of my joints, and i was refered to an MSK clinic straight away, who in turn reccomended my referal to prof g.

maybe you could try doing that and see a different GP? good luck!

[curlysue]

If I may have a small rant, a few years (!) after starting this thread... I am still having problems with particular doctors that I see (for Chiari malformation).

After nearly five years of dealing with them, they have had their moments of niceness but they are still in the main unhelpful and patronising, and I get the overwhelming feeling that they just can't be bothered with me any more. In appointments, they (three of them) sit behind their desk looking bored, and when I tell them of recent developments they dismiss what I'm saying and practically stonewall me at times. They don't listen and they show no enthusiasm at all for sorting my problems out (they never did, really).

I saw a headache specialist recently (at UCLH as it happens) who said I might be getting tears in my dura because of HMS/EDS, and this could be causing low CSF pressure which in turn causes headaches and also, ta-da, resembles a Chiari malformation. When I suggested this to the Chiari doctors they said: "Impossible, doesn't happen," etc, saying the dura is "like leather" and doesn't tear. Just "doesn't". This despite the fact there is reams of literature online which says actually, yes it does sometimes. They just didn't want to discuss it. I didn't feel like bringing up the research that I'd read because in the past they have reacted badly to me doing my own research.

I am so, so sick of them. I know they are meant to be 'experts' and I'm sure they are very clever and have helped a lot of people. They just haven't helped me an awful lot, and every time I have to see them I feel depressed because I know nothing constructive is going to come out of it. I'm tired of feeling awkward and inhibited and like I have to sit there all quiet like a little mouse while they tell me what's what (or, more increasingly, shrug their shoulders in a kind of 'what do you expect me to do about it' way). I'm tired of explaining to them that I'm going through a bad patch with symptoms only for one of them to say "oh well you sound like you're doing okay" - like, did you listen to what I said *at all*?

I have also had second opinions relating to my Chiari but sadly they have been from similarly patronising consultants. One of them told me I should 'probably try and cope' with my symptoms. Brilliant, why didn't I think of that?

I know this is not a Chiari forum and I'm not asking for recommendations to other doctors obviously - just wanted to have a rant. Appointments with them are like ... well I might as well have an appointment with a brick wall in an expensive suit. I used to want to make an effort to communicate with them, to the point of worrying and stressing about how I could word things 'just right' to spare their fragile egos - with limited success - but these days I just want to get the heck out of there and go home where I don't have to deal with them.

Grrrrrrrrrrrrrrrr.

CSx

[isotope]

sorry to hear about your brick wall, you're obviously an intelligent articulate woman and they are obviously blinkered (to be polite).

I never have very satisfactory experiences with doctors, they have been good for perforated ear-drums and extreme tonsillitis (a recurring problem I have) but I usually avoid seeing them for any other reasons and when I do I wish I hadn't. Experiences include:

1) going to a new doctor not long after moving out of my home for the first time, telling him I was having severe stomach pains and could it be change of diet, or what was the likely cause and being told the only possible reason was I was pregnant and he wasn't willing to consider anything else until I'd taken a pregnancy test (needless to say, I wasn't pregnant)

2) first time I had a bad neck problem at age 21 or so, I was literally just flicking some hair out of my face and felt something go, after which I was in extreme pain and unable to hold my head up without propping it on my hand. Terrified I went to A&E, only to be told I was wasting their time with a non-emergency and I had just slept in a draft and not to be so silly. This was the start of recurring neck problems. Believe it or not I *have* had the sorts of neck pain that comes from sleeping in a draft and wouldn't bother a GP let alone A&E with that.

3) Speaking of which, after being in a minor 'car going into a ditch' crash I had the same neck pain, propping my head on my hand etc. and decided that just in case I *had* damaged this time it in the crash I'd see my GP. He sent me to A&E for an x-ray, which showed that the curve in my neck was reversed. Suddenly A&E wanted to treat it seriously however *I* kept saying I don't think it's serious, I get this problem all the time. They wouldn't listen and sent me for an MRI which showed that my ligaments hadn't snapped and my head wasn't about to drop off. Then they told ME off for not telling them I had recurring neck problems…..

4) Went to the doctor a month ago, I was worried that in martial arts the previous week my instructor had put a lock on me and my wrist was in a lot of pain and in that same place there was a white lump sticking out of my wrist and it wasn't improving. I was told it was just sprained and I'd probably had the lump all my life and never noticed. It's possible. However, a month later (now 5-6 weeks post injury) I'm no better, still have pain and sometimes numbness in my fingers and my wrist has started cracking oddly the last couple of days which it never used to do. Still… probably just sprained, eh?

5) I'd like to get a diagnosis for HMS as it may be useful for various reasons, if only explaining to people (e.g. work!) why I'm sometimes stiff or in pain, but most importantly why I'm sometimes so tired I can't function and that I haven't just been overdoing things, I've just been living a life. But I just see the doctors as a huge hurdle.

[curlysue]

Hey thanks Isotope

Sorry to hear about your experiences too. Funny you should mention A&E, as I've had very mixed experiences with it. I have had doctors take me seriously there, but also not. Most notable was the time when I had severe issues sitting/standing (i.e. starting to black out when I sat up) and was terrified as I had no idea what was going on. The GP on call came to my house and recommended I go to A&E, once there via ambulance (moody paramedics aside who thought I was wasting their time - okay, I'm not bleeding to death, but I can't stand up!) I was asked to sit in the waiting room despite telling everyone there that I was blacking out when I sat up - eventually I lay on the floor!

One doctor seemed sympathetic, wanted to keep me in overnight for observation (and he ordered a CT scan) - but then he went somewhere and I was seen by another one, who got my name wrong (it was on the notes in front of him), talked to my mum instead of me, referred to me as a 'young girl' and said I was just anxious. (I was 28 years old at the time!) He discharged me so we just had to leave and go home.

Now I know that I have POTS (thanks to Prof B / Prof M) but at the time I didn't and I was terrified.

It's funny you should mention your neck too as I have problems in that area and often prop my head up with my hands as you describe.

Seeing doctors shouldn't be a hurdle but sadly it is that way sometimes. It makes me angry. And depressed.

CSx

[madmum]

I have not just been patronised by doctors but have been accused of making things up and being mentally ill. On my notes is a piece from one ortho who says no doctor at anytime should offer me any treatment unless there is an organic reason for it. He also says I am not to be seen by a registrar but only a consultant. This has knocked on to my son. Now we do not trust our local hospital at all. It has caused so many problems it is ridiculous. A lot of doctors seem to think they are better than us and that we spend all day looking up symptoms to go with.

[mazza111]

For my daughter to be discharged from fracture clinic consultant after dislocated knee and told she'd grow out of it. Less than a week later she was back and seen a different doc who took her seriously. Now looks like surgery and long term physio

[gila]

big ! (and sorry for late reply- only just saw this)
pity enough ... it is still rather common to get a med bod that doesnt know the difference between being hypermobile and having hms, nor has a real understanding of EDS and its various forms
(lots of similar experiences/posts on here )

if you feel up to doing something to educate that prof and her staff (I hope you do)... you could print out and send her this:

http://www.dwp.gov.uk/publications/spec ... -syndrome/
(which includes info on gastrointestinal probs (as well as other non musculosceletal probs) being associated/being a sign/symptom of HMS)

and maybe so that she can see for herself (by comparing) why the DWP info includes "It is indistinguishable from Ehlers-Danlos Syndrome – Hypermobility type (previously known as Ehlers-Danlos type III)" this:
http://www.ncbi.nlm.nih.gov/books/NBK1279/

and for more re the "indistinguishable" - she might want to look up a paper published in 2009 in the "american journal of medical genetics" titled
"The Lack of Clinical Distinction Between the Hypermobility Type of Ehlers–Danlos Syndrome and the Joint Hypermobility Syndrome (a.k.a. Hypermobility Syndrome)"

'authored' by Brad T. Tinkle (Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio), Howard A. Bird (University of Leeds, West Yorkshire, UK) , Rodney Grahame (University College Hospital, London, UK), Mark Lavallee (Memorial Sports Medicine Institute, South Bend, Indiana),
Howard P. Levy (Johns Hopkins University, Baltimore, Maryland), and David Sillence (Connective Tissue Dysplasia Management Service, The Children’s Hospital at Westmead, Westmead, New South Wales, Australia )

good luck!
xxg

[Lisa77]

Saw a consultant about a knee injury and obviously the weight issue came up. Told him pain in the knee and various other areas plus serious fatigue had conributed to lack of exercise and weight gain. Told me (in the voice of a grown up talking to a two year old) that if the calories that go in here (whilst putting fingers to mouth) are all used up then there wouldnt be a problem. Nice one Sherlock. I know the extra weight isn't helping but the pain was there BEFORE the extra pounds?!

[sheppeyescapee]

Oh jeez. I've had consultants do the exact same thing. The weight only became an issue for me after my mobility got worse because I wasn't burning the massive amounts of calories I used to when I was extremely active. Am slowly getting the weight down but it is a struggle when you can't get around that much! I had a severely overweight surgeon lecture me about my weight and criteria for surgery, at least he saw the irony in the talk and said he wouldn't qualify!

[nemonie]

Also google 'gene review' then do a search on there for Ehlers-Danlos Syndrome and print of the gene reviews for each different type that pops up (I think they have reduced it down to 5 now). Then send those to her along with the paper about EDS-Hypermobility type being indistinguishable from HMS.

She sounds like an utter moron, with her head so far up her own a**e she can see the daylight again

Ask you GP for a second opinion and explain how stoopid she was.