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kim,l
12-16-2009, 10:44 PM
hi everyone went to rheumi yesterday got some tests results apparently my ana results were extemely high . my rheumi also recieved letter from that real nasty neurologist i seen a few months ago the one that seen me for 5 minutes told to undress walk across the floor told me in his opinion i had no lupus i was fat and it was all in my head and he could send me to obese clinic i was extremely embarrassed when he did this right in front of 2 trainee doctors i was in my underwear i told my rheumi yesterday that i am so sick of doctors telling me it is in my head and that this guy only said this because he is a friend of that idiot doctor who when i first got sick last year and spent 5 months in hospital in a wheelchair that i was having nervous breakdown and had drug seeking behaviours. went shopping today it was 41 degrees i have broke out in rash am severly fatigued and it caused me to be nauseas and dioreah am aching. i just do not know what to do that one doctor is making my life hell just because she does not want to admit that she was wrong. it makes me feel like i have to defend myself all the time i was extremely uncomfortable at the rheumi yesterday. why is it so hard to get doctors to believe you i have postive ana all the time now i am worried he will doubt me now how many times do i have to go through this with doctors. i have told rheumi that mexotrexate is working i feel less fatigued and the pain is better form what it was. i am just so angry i just wish they could come up with a better test so we were not written off as being crazy. i pass every criteria i have muscle pain, fatigue, sun rashes as well as the sun making me sick and dizzy and achy , the headaches, brainfog, constant urinary infections, trouble swallowing, chest brain, when breathing in. mouth ulcers , numerous miscarriages, swelling, anemia, high ana all the bloodtests come back saying they believe i have lupus my mother has lupus the pain in my joints and muscles, what more proof do they want i am avery angry and extremely hurt and upset this disease makes me feel depressed enough without having to deal with stupidity all the time can someone tell me does it get any easier do people begin to believe you or is this something we have to just put up with for the rest of our lives or until this disease kills us i am sorry if this sounds harsh but i am so sick and tired of being treated this way and being made out to be a idiot one minute i am angry the next crying what do i have to do beg them to believe i am sick and just not crazy i just want to be at peace with this disease and feel i can trust doctors to help but i have no faith anymore just anger and frustration and so bitterly let down i try so hard everyday to fight this disease but i am losing the will right now with everything that is going on i have very little fight left i just donot want to be constantly battling doctors. i am sorry i am such a downer and ia apolgise if i have upset anyone . i wish you all a merry and pain free christmas and thankyou for being there this last year you have truly made a difference to my life and for that i am eternally greatful i love you all you are like my second family again i am so sorry for venting. hugs kim l

Angel Oliver
12-17-2009, 06:20 AM
Oh Kim,

Im sorry you experienced this,but many of us understand and many here like me are also trying to fight doctors proove we have this illness.My rheumi told me i have Lupus then changed his diagnosis.So you keep fighting them all.First thing you MUST do is complain to the authorities in chanrge of your Doctor and COMPLAIN like hell for what they put you through at that appointment.I never let trainees in anymore,you have that right to say no.But to say all those things makes me wanna fly over n sort em out for you.DISGUSTING is the word what they did.They have a duty of care towards you and show dignity and care...you got none of the above.Put it all in writing immediately.
Most of all,keep coming here.I feel like you often,i come here write it down and members help me gain perspective.I know my body like you do.Unfortunetley it takes time and many doctors to find out for sure what we have.So you hang in there and dont give up.
Lots of love n gentle hugs
Amanda.xxxxxxxx

kim,l
12-17-2009, 06:37 AM
thankyou amanda it is a constant struggle my rheumi believes i have got it but when he gets letters from other specialist sticking there nose in i worry they may influence him may make him query himself even though i have all the symptoms and the bloodtests indicate i have all the positive criteria for lupus and my mother has it. i still worry he will pay more attention to this idiot neurologist that i only met once for 5 minutes and not to me donot get me wrong he is a nice man but that stupid female doctor i had in hospital her notes seem to follow me where ever i go even though she misdiagnosed me she will not apologise how many more positive bloodtests do i have to do before they just accept that this is whats wrong with me. i just wish they could develop a conclusive test so we never had to go through this. hugs kim l

magistramarla
12-17-2009, 11:01 AM
Oh Kim,
Why can't anyone treat you and your family right? You shouldn't be put through so many indignities. It just makes me so angry at those docs.
I went through it with one bad rheumy in Texas who refused to treat me because my blood tests didn't register "high enough" for him. Then I found a great one who was doing a lot for me. Unfortunately, I had to move, and now I'm starting all over with a new one. She seemed a bit reluctant to take my other doc's word for it, and now wants to rule out some other things. At least, she's not changing my meds while she does this, so I'm going along with it.
I'm with you, though. Why can't they just accept that AI issues are causing our symptoms and treat us accordingly?
You hang in there and fight for what you know is right, sweetie.
Gentle Hugs,
Marla

kim,l
12-17-2009, 04:01 PM
thankyou marla for your kind words at the moment my rheumi is being great and i think he still believes me because my blood results are so positive but that neurologists letter i do not think he had any right to send this letter to my rheumi he does not even know me as i said he only seen me for 5 minutes and he also had the blood results in front of him they were all positive for lupus i just do not understand why lupus is such a problem for them to believe. i do not think that other medical reports should be given out freely to other doctors either i never gave this neurologist permission to send letter to rheumi or my gp he just took it on himself to do this also this female doctor i had in hospital her reports follow me where ever i go all because she misdiagnosed me and treated me badly in hospital just because i ask for pain medication for my headaches and i had severe pain in my neck and back she accused me of drug seeking behaviours and i was so upset i reported her to the hospital board now she is making my life hell because she told everyone it was in my head and i only wanted drugs as if any of us want to be on this medication all our lives but it is just something we have to do to control this illness. i just do not know what to do to stop her constantly giving her opinion to my specialist even though my rheumi is not taking her word for it i do worry everytime i see a new specialist is this what i will have to go through. thanks for listening oneday hopefully they will have a new test that conclusivly proves lupus so we do not have this problem anymore what a relief that would be to us all hugs kiml

SandyR
12-17-2009, 08:21 PM
Vent, girl, vent!

DrinkofWtr
12-19-2009, 03:45 PM
I hate to say this, but I think we have to put up with Drs. not believing us for the rest of our lives. Unless we find one who believes we have lupus. Fortunately, over the decades I have had it, I found two Drs. who did believe me. Unfortunately, one of them retired some years back, but at least I have one.

You would think when they see that your Mom had it, they would believe you. My Dad has it and my current Dr. took that into consideration when he believed me.

I am sorry that your Drs. treat you the way they do. Keep on looking. I believe you will eventually find one that believes you.

Drink

kim,l
12-19-2009, 04:43 PM
hi drink of water thankyou i think you are right it is so difficult my rheumi is good and he is my primary doctor it is the other ones that i have to see at times that keep on sending him letters with there opinions. my rheumi knows the medications are helping and that my ana and other bloodtests prove i have lupus but i think he just gets sick of getting letters from these other doubting doctors i think some of these doctors want to see me with the rash all the time but i can not just make it appear and disappear when ever they want and some days i feel better than other it just depends on whether i am in a flare or not. i am just going to stick to my gp and rheumi. hugs kiml