Feeling let down by doctors

[cghanima]

how rude!!!
a made up medical condition??? is this guy a doctor???
well if your nuts so am i (and lots of others on here)
i was always being called clumbsy or a drama queen, i must have been asked the questions
are you sure it hurts that much???
have you thought of having your glasses checked???
how many times have you been this year???
and being told ok we will xray to prove there is nothing up
i walked round with a broken wrist for a week before anyone would belive me

have you got to go back hospital for a follow up? how is it feeling now?

sending you some hugs
take care
carol

[barkingmad]

Hi Fawn

send me that doctors name and address and I'll send him some medical information on our 'made up' condition

If I was you I would make a formal complaint... just makes so angry!!!

[Tabi]

Quite simply, yes. The 'specialist' at UCH.
"Maybe you just need to work a little bit more with your physio" - said with a sweet smile.
I feel patronised, insulted, hurt and demeaned.
Going to go kick stuff, whilst dislocating my "totally normal" not-that-flexible "not EDS because it doesn't exist" joints.

[cuddles]

you know what it is down right disgusting how we all get treated from time to time,or sadly all the time
it's not that we are hypochondriacts, we know that we are ill ,well you know what i am getting at
remember that song by labi saffre "something inside so strong " thats what i feel like sometimes
ie "the more that you refuse to hear my voice,the louder i will shout "
why do people train to be doctors,to heal,to help, to support or to leave us alone in the dark

i said this to one so called specialist after he gave me an ear fall about podiatrists and that they dont know as much as him because he trained twice as hard and long to get where he is . My reply was "you may have had 5 years medical training ,and 10 years as a surgeon ,but i have had this problem for 40 years ,i know more about marfans than you will ever know ,i cope ,i never moan ,if you can not help me then send me someone who can "
funny he listened after that

hugs
me
xxxxxx

[Ouch!]

I am so happy! I am not alone! My GP's (all of them at the surgery) are a waste of space! It goes from "what are you taking this medication for?" to "Hyper what?" and then to top it all off had an appointment last week with a well know prof, who hadn't had any feed back from his own Physios, OT'S, Xray Depmnts. Thats great but not much help when your job is hanging by a thread

Mod edit - some smilies removed.

[rockgirl92]

It took me 11.5 years to get diagnosed because of idiot docs.
I first started to see them when I was 4!
what I had to do to get a proper diagnosis was to dislocate my kneecap and almost rip my quads. Then they finally started paying attention. After that it took them about 1 month to diagnose it! The docs at my GP surgery were really annoying.

Also did you know that in Germany the average diagnosis is 2 years as they look for it when you are at pre school!

[cinders]

sorry can't suggest much maybe you could call the physios ots etc and hassle them to report back! Just didn't want to read and run so sending cyber hugs to you and all who need one!!!!!!!! (my gps a waste of space too!
Can't find hugs smiley but thougth is there! (HUGZZZZZZZZZZZZ)

[Marcie]

Hi all

Well i went to see my Gp today for a follow up visit. Now my Gp has known me for 20 years and is someone i have always had total faith and respect for and he listened to all i say ...... usually. I went in and he was doing the pleasantries then asked how i was. I had taken some downloaded stuff from here and other info and was so chuffed with my little self and i expected him to say great now we are getting somewhere. Nope that wasnt going to happen. He wasnt rude or dismissive he just didnt seem to put 2 and 2 together. He did some kind of assesment on me for sleep apnea??? Then ordered more blood tests to find out why i was so tired and in so much pain and a ECG. Then he said when the results come back from that he wants me to go to a sleep clinic!!!! I gave him the answer there on his desk and got all this.

I have a Beighton score of 9
fatigue
I wear insoles in my shoes because of my feet
numb fingers and hands
migraine
sinus problems
drooping eyes
varicose veins
my shoulders, knees and hips regularly dislocate
acid reflux since i was 9
constant pain

i mean i know what i think!! What suprises me is that he was the one who referred me to the physio in the first place and he said he had no doubts in his mind what i was suffereing with so why the sleep clinic??

I dont have problems with anaesthetics and when he saw that he said well you dont have EDS. I know that but thats only part of it so surely that doesnt dismiss all the other stuff? Just when i was begining to think it was all coming together he throws this at me. Is this normal?

Sorry to moan but im really cheesed off at this moment. I had to take my son shopping today as i couldnt even push the trolley as it hurt my back and hips so much then i went to bed. At this moment i am existing. I go to work then i come home sit for half an hour go to bath and bed by most nights before 8 and sleep as best i can if the pain is in force then i get up and go to work. I havent seen much of my kids for the last week and my house looks like world war 3 has taken place because i just am in either too much pain or and just too tired to do anything at all in it. Im going to speak to my physio tomorrow and see what he can come up with i just dont know what to do.

Again sorry to moan but thanks for listening

Marce xx

[ladyred]

Hi Marcie

It really is frustrating sometimes, I think we can all relate to everything you are saying and feel your dismay.

The only thing I can suggest to you is that you ask him to refer you to one of the HMS clinics. I had the exact same problems with GP visits as you are having and eventually I just slapped down Prof Birds details on his desk and told him I'd like to be referred to him. I almost think he was glad to do so cos it meant I wouldn't have to pester him

By the way, when I did get my HMS diagnosis, my GP did admit to not knowing anything about the condition, he'd even discussed my case with the other doctors at the practice and they drew a blank also. It seems they all know about Marfans and EDS to a certain point but not so much with HMS. Try to persevere and don't be fobbed off otherwise you'll just get really down.

San

[barkingmad]

Hi Marcie,

its a familiar story I'm afraid. I agree with San ask for a referral to a specialist. My GP has been dealing with me for 20 years too, she had no idea about HMS/HEDS but has willingly learnt about it now, so she can best treat/refer me, mum and kids. She even partially diagnosed a patient the other day and immediately referred to Prof G.

Hopefully the same will apply to yours.

[Marcie]

Thank you both for your reply. Im back there in 2 weeks and after speaking with my physio yesterday (i can hardly move today ) i feel he has no choice but to refer me. My physio admitted that he knew very little about the condition apart form the physical side that he was helping with so said it would really be essential to push for the referal. Wish me luck


Marce xx

[ebony20]

(Not sure if I have posted this in correct thread?)

Hi all

About 2 weeks ago I was in a pretty bad way with HMS and the pain i was getting I had to take 4 days off from work. I went down to see my GP as I have had enough of all the pains I have (which are there everyday,all day) - Here are all the concerns that I had-

1. I have pain (sometimes extreme) in my right elbow, of which is bent inwards to a degree and pain travels from the joint down to the wrist and up into the shoulder. - This has been like this for over a year.

2. I have constant severe neck pain - all through the shoulders, in the neck base and into the head as far up as the ears. Again all this has been there over a year, I wake up everyday in so much pain im brought to tears.

3. All other general pains in ankles, wrists, fingers, and the severe fatigue that I experience everyday.

I wrote all the above down for the doctor to look at, she did not even glance at what I had written. She then pulled out a chart and diagnosed me with depression (which I do not have! ) and also suggest a session with a councillor - saying "Im not saying the pains are not there only that being low can cause them to be more worse" I tried to explain that whether im in a good mood or not they are the same general and that generally I am a happy person, she replied - "You are not listening to me Ebony".

I then went on to talking about my right elbow she told me my right elbow was of not concern and why am I worring about it?

Finally I was prescribed with a type of anti-dressant to hieghten my mood and for pain.-I will not take these as I do not need them, I AM NOT DEPRESSED I AM IN PAIN - this causes my low mood!! . All I want is a diagnosis of what I may have, I know i have hms but there is more to it now.

[Ali13]

ARGH!!!!

I've had this from soooo many people, my mum, my physio and GPs. This whole "You know...your mental state has a lot to do with it" thing riles me up no end. I am AWARE of that...but yknow, I might be in a better mood if it didnt feel like my entire body has been put on the wheel of torture!!! Get another doctor, but firstly...no...must not endorse violence or criminal activity on the internet...

I feel your pain...which is not in your head.

[ebony20]

Hi Ali13

I have seen 3 doctors at the same surgery that I am signed up with:

(one male doctor told me to take my trousors off at one appointment and then got me on the couch and pulled violently at me right leg to and throw and then turned to my mother - "Dont worry it wont hurt her", he then pulled my leg out sidewards - I felt rather humiliated ) On a positive not he did manage to send me to physio for my bent arm.

When I was 19 I went to see a female GP about my back, she gave me an english lesson on what word to use to desribe my "Swollen" back - I said my back blows up, she laughed when I said this and she corrected my. I asked her to examine me as it looked as though she was not going to bother. She then weighed my and said I was "clinicly obese". I felt so bad, I did not want to tell her the rest of my problems I was experiencing with my pain and my right arm.

Finally, the appointment I explained before just put a top on it all and has made me feel worse, and on top of all this, I am trying to stay in work now but find in difficult to get out of bed as I am in so much pain and am more tired then when I go to sleep in the evenings.

The present doctor I have seen said I should stay in work, which I do agree with but I do find it a task everyday - (only doing 5 hours a day)

I am sorry to hear that these people are doing this to you, I am very lucky that my mum is supportive and has done alot of research into my condition and feels she understands a lot more and trying to make the gp's/physios, etc understand that there is something more then the HMS.

(WHY WOULD WE MAKE UP PAIN THAT WE DO NOT WANT)

Ebony

[Ali13]

Deepest sympaties pet, thats miserable. It's like, no matter what you go to the doctor for, they feel the need to ignore you and comment on what they think is most relevant. A friend of mine has had awful problems with her hand, turns out shes a medical marvel (got some weird condition to do with veins and arteries merging) and she had to put up with months of harrassment about her weight. So eventually I think she just got a new doctor.

Yeh, I nearly died off when my rheumy started yanking my leg left, right and centre. In my underwear. The strangest thing was that I got embarrassed when my hip started cracking and popping. There I am. In my underwear. With a strange man yanking my leg. And I get embarrassed because of a few noises?!?!