View Full Version : The End !
04-04-2011, 10:10 AM
As you all know from November to March i had pleurisy and my gp told me to ask my rheumi for confirmation of lupus. Well the appointment arrived and a full apointment lasted 4 minutes approx.He wouldnt listen to me,spoke over me as i had an answer to all his questions and dared to ask many questions,like when he said my blood was quite good,i told him im on plaquenil so to take me off it then do a blood test just to know for sure.He wouldnt listen.Instead he increased it and i left so upset.I rang my gp and told him,you told me to ask the question now he will think i want lupus...he said no he will check just wait till i recieve the letter back from him.
Well last week i got the copy letter the rheumi sent to my gp.It basically read,for some reason this patient wants to be told she has lupus.I hit the roof!!
I called last Monday and spoke with the practice manager and explained what he had put n told her the gp told me to ask this question.My gp called me thursday eveing for half an hour.I told him the rheumi did say what i told the gp he would say that i want lupus.I explained i just want to know for sure whats my diagnosis.He basically wouldnt listen to anything i told him.He accused me of always thinking from 2004 i have had lupus and i told him,the first time i heard the name lupus was in 2008 when i saw the rheumi when he told me i had it.No matter what i said to my gp,he wont listen.He gave me the option of getting a new gp or never mentioning lupus again.I told him how unfair this was as im entitled to know whats wrong with me.
So now im at square 1.The gp said i have to concentrate on sjogrens and M.E which is the illness noone believes is real and back to being treated like im a hypo.
All this fighting for nothing but making myself look bad because how dare i ask for a second oppion to find out for sure whats up with me.
I feel sick! I told the gp,he will always now believe the rheumi,who never has examined me.
Its like a secret club im trying to get into.I said whats the big secret,why wont you test me properly? I explained i have 4 out of 11 of the criteria,he interupted me and told me forget the lupus you have M>E. I feel its the end of the road for me now.
That night i didnt sleep.Instead i stayed up and got a file together.In there i wrote about the criteria and all that id been through and about all the M.E Fine trials i had done.Turns out he wants me to do stuff again that were useless,because he says i want lupus.To get him to understand the facts i have got many overlapping symptoms now is a no no as he wont listen.
I cannot get another doctor as in my notes now will be what that rheumi has said.
I know many members here are going through the same.I told him so im going to be a 20 year waiter then,because we dont know for sure.
At least now he has a file on me that i put together,so hopefully he will show it someone with a brain or decide for himself to do a test, a proper one.I told him stop all my meds then test me.NOPE he wont do it.Its like he doesnt want to be proved wrong,it feels that way now.OR maybe theyre right and its not lupus but now we will never know!
I have not got a clue whats going to happen to me now.I feel so worried,the dread scares me.
Im not sure whether its money thats the problem or just plain ignorance,but what a cheap shot to blame me the patient hahahaha the nerve of some people.
I told my gp,dont you realise i want to get better to live and work again like normal people?
So please say a prayer for my future now.Going to be all fun n games i bet wasting my time on stuff ive already done,group therapy yaaaaaaaaaawn and nothing positive thats how it feels right now.
Ive not give up just yet.....im afraid more than anything....but it feels like The End of the road right now.
Makes me so mad!!
Lots of love
OK Amanda, I guess I don't get why you can't get another Dr? I did! Several times and I gave every one of them the file I had as well as 2 brief pages. I that told a general story of what had gone on in my life and all the test results that had come back abnormal. I gave the nurse a copy of all my papers except for the two pages I just mentioned. I headed those to the Doctor after he came into the room. He couldn't ignore them when I was sitting their looking at him. I knew he wouldn't look at the file but at least he would have something because I never knew what stage my brain would be in when the appointment time came!
Don't you DARE give up my friend! Don't let the doctors ignoring you make you cower down in a corner. Fire the doc and move on (if you can do that in the UK). You know your body better then they do so stand up for yourself no matter what others think!
Remember we are all here for you!
04-04-2011, 11:01 AM
Amanda, you're right that many of us have also experienced this. For years I had an HMO and one doctor wrote that I was a paranoid schizophrenic and my symptoms were somatic (he's the same doctor that tore up the letter from the rheumy that diagnosed me with Lupus.) He wasn't qualified to give me that diagnosis but every doctor after him saw that in his notes. I tried getting it removed to no avail. I was told that doctor's notes can't be removed. I went as far as going to a psychologist and having her write a letter saying basically that I had no mental health issues. It was devastating and no doctor would take me seriously. I finally left that HMO and took all my records, minus the doctor's notes, to a new doctor out of that system. I don't know why some doctors get threatened by patients and want to use their power to put the blame on us. It makes me sick and I'm so sorry you're going through this. I know how you feel and it's horrible!!
Oh Amanda I was so ticked at the doctor that I forgot to say how sorry I am! I have been going through this until recently and I understand the hurt and anger that comes from it! I have been having a couple of rough days so ignore my insensitivity!
04-04-2011, 11:35 AM
You have every right to demand that these inept doctors examine you properly and treat you with respect. I agree with Tgal, take your information/history with you to each and every appointment and insist that they refer to that information when talking to you about your illness. If you continue to do this each time that they see you, they will eventually understand that you are not stupid, you are not going to back down, you are not going to allow them to dismiss you, and you are not going to leave until they address your issues and provide competent treatment.
If you fit 4 of the 11 criteria, then they must listen to you and not dismiss you. And, if you fit 4 of the 11 criteria, why do they insist upon ignoring that fact?
As I mentioned earlier, how dare they tell you what you can and cannot discuss in their presence. If they can put limitations on what you say to them, then you can put limitations on what they say to you. For instance, they can never, ever again tell you that YOU WANT LUPUS or that you are a Hypochondriac. What you demand that they do, regardless of what they want to call your illness, is to treat your symptoms and treat you with respect.
I wish you the very best and I am sending you hugs of understanding!
Peace and Blessings
04-04-2011, 01:57 PM
Thank you all for taking the time to read this i know it was long.I went cross eyed when i read it back hahahaha.Mari,the thing is from 2004 to now has taken its toll on me.This is my 4th doctor.The first said i was depressed.Second said i had nervous breakdown.3rd was the one who was more intereted in dead patients and this one is the one who i used to talk to when mam had her brain hemerage n dad had his leukimia.So he knows me.He always says ive known you along time,i know you are intelligent.....yet he wont seem to listen that he told me to ask the question and so instead,the notes i put together myself,i wrote it in there.He may not even read them,time will tell.But everyone ive seen have all pointed to lupus.
Once or twice ive wrote little notes and gave them to the rheumi in the appointment.He took them off me and said,i will read this on friday when i do my admin.The first time i said well im here now,what use is that to me? Then he told me i had lupus,to then changing his mind saying my bloods were amazingly better than he thought.I wrote complaining of his wrong dx as id told everyone n joined here too.He wrote back n apologised.Now i have NIL faith in him after now hes making me look like im the doctor diagnosing myself.Idiot! He should learn to listen as im not that type of person at all.
Its sad to read many of us go through this behaviour from people who have the power to just sit back ,listen and then explain things properly,then diagnose us.For me it feels incomplete.But i will take all your comments and use them wisely.Thank you so much.Im not giving up just yet,it just feels like the end of the road...if you know what i mean.x
Lots of love
Amanda the hypo hahahahahaha NOT!!!! x
P.s in the UK we dont have our notes.The doctor keeps them,but they can send us certain copies of letters.Thats the file i made up for the doctor.So he can see my history and my symptoms to date.etc.
04-04-2011, 04:44 PM
It makes me angry to read what they have been putting you through.
Can you request to go to a doc who is associated with a teaching hospital there in the UK?
A Rheumatology dept. that actually does research on Lupus and other AI diseases might be better for you.
Good luck, sweetie.
04-04-2011, 04:58 PM
you know something?I am actually too scared now as my gp just wont listen to anything to do with lupus end of! He said i have to concentrate on srjogrens and M.E from now on and if he hears me speak of lupus,it will prove he is right that i am still focused on lupus.I feel panicked tonight.I,in a way know whats going to happen.I will be sent off to the same group session again which didnt help me at all.He seems to want me to go away.Like who are you to second guess a qualified professional.Thanks for caring.Hope you are feeling bareable today.
lots of love.xxxxx
04-04-2011, 06:40 PM
I don't know what to say to make it better.
I've heard the "H" word all my life. All I can offer is hugs and understanding
hugs, good thoughts and love,
04-04-2011, 07:31 PM
I just wrote a thread so similiar to yours and I'm so sorry you're going through this, too! What is it with rheum and Lupus???? My current rheum has diagnosed me twice or three times with a variety of AI and then decided I don't have it. I've been on three different Lupus drugs -- strong ones, but they always end up doing more harm than good. The Prednisone works the best but even I agree I need to get the dosage down. My primary care doc, who I actually worship (don't worry, no stalking), looked at me the last time I was in the hospital when I was swollen like a sausage, in incredible pain, and on massive doses of steriods to get the swelling down and said, "Susan, this just isn't fibro (my rheum's favorite diagnosis)." My Reynauds was absolutely glaring. There was so much wrong it was hard to know where to start but my original rheum had decided, regardless of all the evidence to the contrary,it had to be fibro because that's her specialty. Right now I'm waiting on a new group of docs to help me out and am getting off the Lupus drugs until I'm told otherwise.
All I can say is that I'm really, really sorry that you're going through this. We know our bodies. We know when something is wrong. And if there's something so many of us have no choice but to continue to fight even when we already feel knocked out. I'll keep you in my prayers.
04-05-2011, 06:39 AM
Amanda and Serand4 I'm right there with you. It's all very frustrating. I go through cycles where I fight for a label and then cycles where I am too tired to fight. The most frustrating thing to me is that every doctor I've ever been too always jumps to Lupus as one of the first conclusions on hearing my medical history. We've already ruled out Lyme's, cancer and countless others but none of them want to commit to the label without the blood work. So very frustrating when they all admit that I have the symptoms. They rheumy even went so far as to write MCTD in the chart but never does he refer to it and when I ask him about it I'm met with the question of why do you go looking for another answer when you already have one that fits. I always say because it doesn't fit everything but he blows it off. Sometimes I think it's the doctors who are the crazy ones.
04-05-2011, 12:22 PM
Hi Serand and Sandy,
Thanks so much for your support and i am sorry you both are still going through it also.I read an article on how doctors think.Was very interesting in my case.To do too many tests and trying to go above a consultant can be seen to be 'showing off' from a doctors view.So they tend to go with the rheumi's conclusion.The fact this rheumi first told me i had lupus is in the past and until someone actually joins up the dots there is nothing i can do.Our time will come,i know as ive seen it here many times.Just hurts doesnt it when noone seems to listen.I even said do you really think id want a label for an illness if i wasnt sure it was the right one? The answer i got was yes hahahahahahahahaha such a bunch of twaggots!! Keep strong...we'll get there one way or another.
lots of love
tiggerlishus - Heidi
04-07-2011, 05:21 AM
aww my poor angel now i don't what the name is but there is a place you can complain about medical practioners here in uk but i will look in to it for you! also i have appointment at st thomas on 18th april i don't know if will help but my two ideas is either i can ask them if you can write privately to them with your details and see if they can help or if you want you can send me a copy of that file and i can take it in myself and try and pass it to the right people???? pm either on here on fb and i will see how i can help hunnie xxxxxx lots of hugs xxxxx
04-07-2011, 01:16 PM
Thank you Heidi.I will take any help right now.My gp never wants me to talk about lupus again,even though i never got that confirmation or blood test without the plaquenil.I feel im in limbo.I gave the gp the file so i have nothing right now.God i feel alone.I know ive never been sick before until this and i swear i want to be better so i never have to deal with the politics of sickness again.I had no idea!! So whatever you can do even if its advise i'll take it....but i wont be mentioning it to the gp....hes having none of it.What the rheumi says goes....even if the gp asked me to ask him..I think its was done on purpose to get to this point where actually im the one looking more like a hypo than anyone.Thanks to these professional my sleep has stopped again.Poo is todays word hehehehe.Hope you are doing ok and so glad your doctors give you a chance and actually listen.
Lots of love.xxxxxx
My heart goes out to all of you! I am just coming out of the idiot doctor phase and found a wonderful one that without questions says "Lupus with Seizures". It made me feel like I wasn't crazy! Today I went in because the flare is getting worse so he gave me a mega dose of steroids and upped them for 2 weeks so we can get a handle on this. The thing that scares me is that if the plaquenil isn't working like it did I think I have to go to a rhuemy for the next step (metho or the like). I don't want to have to go back to someone I have to convince. It is nice to walk in and be understood!
My wish for each of you is that you find that someone that understands sooner rather than later
tiggerlishus - Heidi
04-08-2011, 05:12 AM
dear angel when i go i will ask as many quesitons as possible for you and i will get back to you! i know how it is it did take me a while adn i still get some problems but with st thomas involved it has greatly improved so i do have hope for you lots of love and hugs xxxx
04-11-2011, 11:09 AM
Mari and Heidi thanks so much for caring.Ive been so low since the chat with my gp thinking now i am alone and not allowed to talk to anyone or mention that 'L' word again.But that leaves me with more questions...i dont understand whats going on! So today ive nothing to lose now as ive wasted so much time anyway i wrote a letter to the rheumi and the gp.If i lose em both ive not lost anything...hahahaha.Oh im so fed up!
lots of love.xxxxx
tiggerlishus - Heidi
04-11-2011, 12:30 PM
good luck with you letter angel if you ever need a chat just message me and i'll give ya my home number you can mention the L word to me as much as you like!! i got st thoms in a week so i will ask them some questions for you too x big hugs ( make you chuckle i just had to rewrite hugs first came out jugs lol )
04-11-2011, 05:54 PM
Hahahahahaha well im lacking in jugs hahahaha:)x Thanks for being so kind and goodluck at your appointment.Im not giving up just yet,hoping this letter triggers a little understanding.....but i wont hold me breath lol.
Lots of love.xxxxx
tiggerlishus - Heidi
04-12-2011, 07:09 AM
more than welcome thats what friends are for! i'm actually going to thier pregancy clinic see if they can help us with that department so fingers crossed! and you never give up we're all behind you to support all the way xxxx
04-12-2011, 10:14 AM
Oh wow goodluck Heidi and thanks always.My sleep patter is in total reverse.Awake all night then asleep in the mornings till dinner.Its an awful feeling of jet lag daily feeling unrefreshed and exhausted when i wake as ive had too many days awake so my body is trying to catch up.My mam told me today i need to go back to work....its like im total alone with noone who understands the hell im living in.They think i can just switch it off n move on.Rusty knee and arms numb day today.Still in my nightwear corrrrrrrrrrrrrr hahahaha.Oh the joys!
Lots of love.xxxx
tiggerlishus - Heidi
04-14-2011, 04:11 AM
ow thats awful i once had a fill in gp tell me that when my one was away!! and that was bad enough but your own family! i wish i could nock on your door in my pj's too and give you big hug!!!! we live in same country but yet it feels so far away! know we're all her for you on whl always and if you need me can't find me on here have look on fb your find me there! lots and lots and lots of hugs xxxxxx
04-14-2011, 11:01 AM
Im used to it.From the day i left work to now only 1 person from work even knows i still exist,the others never check up on me.Hurts as i was always the one to arrange visits n flowers for others...me ...nothing.My family just want me out of the way,i think ive been sick long enough hahahaha...as if it was that easy!
I know we all live 4 hours or so away from each other,but thanks always for caring it helps me allot.
Big hugs n love to you.xxxxx
I just had to pop in here about the work and family thing. Isn't it amazing how they loved/admired/needed you when you were there every day but when you are the one sick you fade away so quickly and aren't worth their time
04-14-2011, 12:33 PM
Oh yes i know.Thing is ive tried added certain people from work,they dont add me,yet theyre always saying keep in touch.They forget im sick n still employed with them lol.To be honest,ive been too sick to be bothered.I always thought it should be them chasing me,not the other way round? Their loss hey Mari !!!
Lots of love.xxxxx
tiggerlishus - Heidi
04-15-2011, 04:07 AM
oh i sooo know the work thing! my last job was a nursery looking after under 5's and when i had to finally left after trying everything to stay doing part time having breaks and gonig back everyone said oh we must keep in touch! so have added me on fb other haven't but all of them hook for lunches and nights out put ictures up but send no invite out! it hurts so much to see everyone donig what you used to do even if you couldn't go its nice to have an invite! i have really struggle with this lately i tried making girly dates with friends last week fully booked my week up by end of it wass so knackered! only seen one person this week other than dan!
i was thinking it would be really great to set up a charity where there like a buddy system for people with auto imunne illness similar to ones i've seen before for people with cancer and for mental illness but for people like us where they be advocate where need with proffessionals but also come round when your flaring keep you company take your mind of your illness! with an added service of phone buddy where someone could be at end of phone if your not quite up for company but need some one to talk to or to remind you of things if your like me for example hosp appoints or even just taking daily drugs! ( terrible at remember morning ones when i'm flaring!) what do you think??
04-18-2011, 03:02 PM
Its funny you mention that as i have an advocate coming round on wednesday!! Turns out,because im the carer for my Mam n brother im entitled to help e.g advocate.So i'll let you know how i get on.
tiggerlishus - Heidi
04-19-2011, 04:51 AM
aaawww thats great angel hope things go great!! on st thom's front i sent you persnal message on fb with all the help i got from the person at st thoms lupus trust hope it helps xx
04-20-2011, 06:42 PM
Oh thanks Heidi i will go and read it. The man came today,he doesnt think he can help me.Back to the drawing board! xx
Linda From Australia
04-20-2011, 07:20 PM
Who didn't help you? Your advocate, or the person Heidi suggested?
04-20-2011, 07:31 PM
The advocate couldnt help me as i wanted him to speak for me at doctor appointments.Hope you are having a good day Linda n feel bareable.Lots of love.xxxx
Linda From Australia
04-20-2011, 07:54 PM
Didn't you have a lady go w ith you last year and the doctor actually paid more attention to you? Or may be I am wrong
tiggerlishus - Heidi
04-21-2011, 05:14 AM
thats such a shame they couldn't help!! this is what i have found with any advocates i have been to thats why i think there a real need for my idea! i am going to seriously look in to it i know couple of people that do charity work see where i can go with it! Angel do you have a friend who knows you really well that is really good with words, tthats what i have done in the past to take a this friend with me that can back me up x hugs x
04-27-2011, 01:40 PM
To be honest since taking ill ive found out friends are not what i thought they really were.So basically i have me alone.The lady who came with me last year did help but the rheumi lied to us so nothing was followed up.She put me in touch with this guy. I need a lotto win.lol.
Ive not been online lately as last Friday my nephew kicked a football at full speed in my face and dazed me.I was rushed to hospital as they thought my neck was broken.It wasnt ,xrayed showed all was good.Concussion,lock jaw,which they clickd back OUCH amnesia n huge headache hahahaha.So ive been resting as felt a bit dizzy .I saw tweety pie flying round my head hahahaha.xxxxxx
04-28-2011, 06:32 AM
Angel have you tried a journal approach.
Write down what you feel physically and emotionally in separate paragraphs with a third paragraph on questions. ask him, the rheumy to read it and write down his answers and thoughts. Say you'll pick it up the next day and that way he'll have a few more minutes to think about you.
tell him - the rheumy - that you're nervous and unsure and need his help to understand what's happening to you. do the same with the regular doctor.
Writing things make it clearer to yourself and to those around you.
sorry you got KOSHED.
LOL about tweetybirds.
05-02-2011, 12:10 PM
Lol i know i saw them for real flying round my head hahahaha.Im much better now though.Yes ive done the sleep diary and the pain n symptom diary,a total waste of time as my rheumi said,i dont do admin till Fridays and it was wednesday.I left them with him and he couldnt remember me giving him them...so all wasted.Even did one for my gp too.Think they wanted me to write things down to feel better when really all that wasted effort made me mad as they were so ignorant not realising how important it was to me for them to actually read it....and they didnt.So i wont be doing anymore diaries.
Ive left a huge file with my gp and he better read it all this time as it has everything ive been through in there.I have no copies either.lol.
My heels when i lie down been hurting so bad lately and my sleep still backwards.Sleep when everyone wakes and awake when everyone sleeps.So exhausting and not so fun either.
Lots of love.xxxxx