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Angel Oliver
01-27-2011, 01:26 PM
Today i went to my doctor about my recent chest pains ive been having.I knew i was getting over pleurisy but these pains had me doubled over n very hot.
As you know i told my doctor recently i had a blood clot on the lung in 1998,but turns out he didnt know or remember.So i sat there.He looked at my swollen ankles actually listens and read my notes.He asked when i next see my rheumi i said i think Feb,its actually March.
I said why is it my M.E, he said no actually i think you have Lupus. As you can imagine,the years of struggle,i sat there laughing.He said im to ask the rheumi to confrim this.I told him there is no way he will do that ive tried.He said he has also wrote to him so just tell him he said.
So i wont hold my breath just yet,as ive been here before.But does feel good to finally get his acknowledgement,but my bloods come back like im the wonder girl lol,but ive not had one recently.
Anyway,this was my day.I'll keep you informed.
Lots of love.xxxxxxx

rob
01-27-2011, 03:58 PM
"I think you have Lupus" -Well, no s**t Doc! Ya think?

Knowing the diagnostic journey you've been on Amanda, I have to laugh too.

But hey, it's one more very big step towards a definitive diagnosis finally.

Rob

Angel Oliver
01-27-2011, 04:11 PM
Yes Rob lol,

It did feel good and i told him i dont want it to be lupus,but he said its looking like it is.Inside i was shouting n poiting my finger at his head Told you so! But i didnt do it real life of course lol.Come March it'll all change again...just have to wait n see now.This pleurisy was a blessing in disguise really.

Love
Amanda.xxxx

serand4
01-27-2011, 07:05 PM
Hi Amanda - you have literally, I mean moment for moment, word for word, just told my story! My pcp is sure I have lupus. I have the lung issues. I have the rheum who has me on methotrexate one moment to a bad fibro flare the next. Blood clots... Yep, we are walking identical paths which leads me to believe that once again, WHL has one hec of a lot more common sense and information that 90% of the doctors, at least when it comes to Lupus. What a funky disease this is!

Yes, it is time to LOL! The lung part stinks but it just confirms what we knew all along.

Blessings and I hope the pleurisy improves quickly.

rob
01-27-2011, 07:31 PM
Hi Amanda - you have literally, I mean moment for moment, word for word, just told my story! My pcp is sure I have lupus. I have the lung issues. I have the rheum who has me on methotrexate one moment to a bad fibro flare the next. Blood clots... Yep, we are walking identical paths which leads me to believe that once again, WHL has one hec of a lot more common sense and information that 90% of the doctors, at least when it comes to Lupus. What a funky disease this is!

Yes, it is time to LOL! The lung part stinks but it just confirms what we knew all along.

Blessings and I hope the pleurisy improves quickly.

Why is it that so many highly educated and experienced healthcare professionals are so totally clueless about such a serious, and increasingly common disease like Lupus? I will never understand the ignorance. In my former profession, I spent a good portion of my day learning about the latest advancements and innovations, wondering how they could be applied to advance the "state of the art".

I was considered an expert in my field, yet each day I shunned that title in favor of adding to what knowledge I already had, knowing that there is no end to learning. My business involved products and issues that were life and death, and I took my business very seriously, but I was just a mechanical engineer, and certainly not a person with the responsibility of a doctor or related specialist.

It just makes no sense to me that so-called professionals in a field that has such a direct impact on people's health, and lives, seem to be so damn stagnant and apathetic. This seemingly never-ending cycle of ignorance really pisses me off to no end.

OK, I'll get off of my soapbox once again.

Rob

Saysusie
01-27-2011, 10:18 PM
Wait Rob..don't get down, I was just about to climb up there with you!! I couldn't have said it better and, as you all know, ignorant and uncaring doctors are one of my biggest pet peeves!!

Amanda; I misunderstood you and thought that you currently had a blood clot. I am glad to know that I was wrong!

So..... I am an avid fan of "Spartacus, Blood and Sand" and my favorite line from that show was in last season's finale..."Kill them, kill them all!"
I realize that this is a rather harsh sentiment for these stupid doctors, but it just makes me feel good to say it!!

I am sending you gently hugs.

Peace and Blessings
Namaste
Saysusie

tiggerlishus - Heidi
01-28-2011, 01:32 AM
OMG OMG i certainly have my fingers crossed that is that final big first step to a proper diagnoses!!!

i am sneding as many postive thoguht my body can spare right now that may be just maybe your docs have finally pulled thier finger out the butt!!!!!

looking forward to hearing that finally you get a proper diagnoses what ever that maybe

much love xxxxxxxxxx

tortugal
01-28-2011, 05:05 AM
well so nice that your doctor has finally arrived on this PLANET! small victory but a victory indeed right? :)

Angel Oliver
01-28-2011, 05:31 AM
Serand, its so good to know im not alone,i always say that in my posts on the forum to all the newcomers,because i know just how many of us are out there.Thing is,as we wait we get sicker.Today,i sound like the dirty caller lol,like an old man,wheezy loud.But thats good its the Mucodyne working thats all.But i am saddened to know you are going through it n wish i was the only one,because i know how soul destrying this journey is.But today i woke feeling 'believed'.So goodluck on your journey too. Part of me isnt with hope,as ive been here before.If the rheumi is busy im not going to be heard...end of.

Rob, i could see the top of your head from here,woohoo you are so right staying on that soapbox with Carlotta,because what you say is true. I think for me, in the UK its easier to give a patient the M.E diagnosis,as its a 'quick' appointment then,more figures to add on the report at the end of the year,i can come back again,i look well, M.E is like the get out clause it feels like,for you have a lot of symptoms but im not too sure what it is.I am not the easy to diagnose patient.So its cheaper in the long run.In the UK,im sorry to say those who have M.E are treated like 'time wasters' 'Lazy' and are not treated like they are ''all there''.I know because i have the label.Once before the rheumi said i had lupus,then took it back after the bloods came back.Now my doctor says it is,but like he said he canrt diagnose me as the rheumi is the expert.
What worries me is when he says nope its not....how many more years do i stay getting this treatment? Its not nice!!
I told my doctor yesterday,after all these years ive read up on the illness M.E and also Lupus.My symptoms fit more in the Lupus category rather than the M.E.I told him yes im no expert,but its common sense to list my symptoms i have and had and look at the M.E symptoms,but most of all look at my BACKGROUND!! This is so important.Dnt assume like i did they read your notes,remind them every appt of what you have been through,like me,pulmary embolism,glandular fever,pheumonia as a child.I have many more of the lupus symptoms plus the Fibro,Srogrens,Raynaurds etc.Time will tell.But thanks both,you are so right!!

Heidi,so glad to see you back here.I just recieved your positive thoughts woohoo,im locking them away for the rheumi appt in march.lol.Hope you are baring up ok and today is being good to you.

Tortugal, yes now lets hope the rheumi arrives soon too lol.Thinking of you n your Mom,hope she is fighting on and you too.

Lots of thanks just keep that little bit of hope n most of all keeping fighting the doctors.They are human not the humans with the god complex.They can make mistakes.Time will tell.So glad i got the courage from everyone here to carry on and not be intimidated by them,some can be scarey!! Thank you!

love n gentle hugs
Amanda.xxxx

tiggerlishus - Heidi
01-28-2011, 06:54 AM
don't you hate it when you press the wrong button!! just typed message and accidently dleted arrggh blood brain with it work with the rest of me!! lol

so here i go again!

amanda

glad you got the postive thoughts !!

i just had this thought why not trying to get your gp to reffer you to st thomas or one like it closer to you! i wasn't happy with my treatment from my local remu and so got my gp to refer me to st thom's and my health has done nothing but improve since! admittly i still get my bad days like today when there has been a spoon monster about!! but drug intake is alot less and i'm not half as bad i was this time last year!

well lots of love to you! and fingers cross i don't delete again! xxx

SandyR
01-28-2011, 07:50 AM
Amanda,
This is such a huge wonderful step forward. I am doing a happy dance for you. I know how long and hard you have struggled to get a proper label on your dx and it sounds like the doctors finally are coming round. I'm so glad you stuck to your guns and didn't give up on the doctors last year. I know you have been frustrated and you are so close to that final step. My fingers are crossed for you that the rheumy will at least use 1/2 his brain and see that all the dots are connecting and pointing to Lupus.
Sandy

SandyR
01-28-2011, 07:53 AM
I was considered an expert in my field, yet each day I shunned that title in favor of adding to what knowledge I already had, knowing that there is no end to learning. My business involved products and issues that were life and death, and I took my business very seriously, but I was just a mechanical engineer, and certainly not a person with the responsibility of a doctor or related specialist.


Just an engineer? Personally, I'm glad to know that someone who was in charge of helping with national safety issues and who dealt directly with weapons that directly impacted our ability to maintain national security did take their job so seriously.
Ok, I'm done distracting you from your soap box now. Carry on.

Angel Oliver
01-28-2011, 08:26 AM
Sandy thanks so much .....how are you?

lots of love
Amanda.xxxx

tgal
01-28-2011, 09:12 AM
I am in a pretty bad place today so if this doesn't make sense I will correct it when I am better but I had to stop in and say THANK GOODNESS! I detest doctors now. I am so glad you finally found one that listened to you! I will surely type much more on this later but I did want to give my congrats. It is about time

Angel Oliver
01-28-2011, 10:11 AM
Mari,

Thanks so much but ive a way to go just yet,but yes good at least my own doctor said it.Dont you worry,get better soon,rest.

love
Amanda.xx

Nonna
01-28-2011, 12:12 PM
Amanda

I just wish it was easy for everyone as it was for me to get a diagnosis. But then I think back over the 50 years that I was in ignorance myself.
Hugs and Good thoughts,
Toni

mountaindreamer
01-28-2011, 01:08 PM
woohoo....hooray amanda,

i am celebrating for you. i don't celebrate you having lupus, but i do celebrate your courage and persistence....you know that you are correct and you are standing up for yourself....hooray hooray for our little friend accross the big pond.

i hope rob's soapbox is a big one, because i would like to climb up there with him and carlotta. but, i am having another bad migraine, so i think i will just have to keep my feet on the ground for today.

amanda, i am so very proud of you, and i hope you realize how far along you have come in the past couple of years. i am sending to you tons of hugs.....

Angel Oliver
01-28-2011, 01:20 PM
Hi Phyllis,

Thanks so much,not 100% confirmed yet,a bit further to go,but thanks so much.Everyone here helped me along the way.Im sorry you havve a migraine,OUCH!! Hope you can rest it goes away soon.Lots of love n Hugs.

Amanda.xxxx

kim,l
01-28-2011, 06:04 PM
dear amanda i am glad that finally someone is listening to you sometimes you like grabbing these doctors and shaking them and saying i told you so i am not a idiot after all your the morons maybe if they had to go through what we go through they would be quicker to listen hugs my friend hope rheumi listens kim l

Samo
01-28-2011, 07:01 PM
Hey Amanda,
Not 100% confirmed you say? Why does that sound so familiar? I know why! Whenever I tell my rheumy "do you think this is part of the lupus" she says "remember, your diagnosis of lupus is but a mere 95%, there is also RA and Behcet's thrown in there". WOOT!! Thanks for the reminder, almost forgot! Now, putting my weak humor aside, I am truly happy that you had a doctor mutter the words "might be lupus". YEAH FOR YOU BABY!! You should have poked his head and said "told you so!" Good for you Amanda, in the mean time please get over that pain that is making you double over.

Love you,
Samo

Angel Oliver
01-28-2011, 07:30 PM
Kim,Nonna & Samo,

Thanks so much.Yes they know how to bring you down that little bit dont they,the doctors.Now...maybe Robs bullets may come in useful....lol...i only joke about that,maybe stick one on the chair upwards....lol.Im thinking i need that angry thread again lol...funny.
Samo how are you and your fury babies,what you been doing? Im going to bed in a min 2.30am...will see if i catch your reply.
Lots of love.xxxxxx

magistramarla
01-28-2011, 10:00 PM
Hey Amanda,
I'm just now catching up on threads, and I was glad to read that you are finally getting some results.
Why are these supposedly intelligent docs so slow to see what is right under their noses?
I'll join everyone else up there on that soapbox.
If I hear one more doc try to tell me that Sjogren's is "only" dry eyes and dry mouth, or that I would be
totally cured if I just exercise and lose 20 pounds, I may be looking for one of Rob's bullets, too.
Hugs,
Marla

Angel Oliver
01-29-2011, 06:46 AM
Marla,

I know some doctors just speak before they ever think.Remeber the M.E diagnosis,one doctor shouted at me for calling it that and said its Chronic fatigue syndrome,nope actually its official name is M.E/chronic fatigue syndrome is one of the symptoms.Now my new doctor in the same surgery,actually next room to the old doctor calls it M.E and thats in the same surgery.So lets see how my rheumi appt goes.....i could come back with a cold lol....funny.Hope you are keeping well Marla or best as can be.

lots of love
Amanda.xxxx

Angel Oliver
03-08-2011, 12:38 PM
Hello to all the newbies sorry ive not chatted to anyone lately,but i do read up here n pop in when i can.Ive been in migraine city lately n spewing from my nostrils lol....sexy lol.
I see the rheumi tomorrow and i have to tell him my gp wants a lupus dx confirmed .I feel nervous as my rheumi isnt going to do this as my bloods so otherwise,i told my gp this.So please send me strength for tmrws appointment and let something positive happen for a change.Not that i want the dx but...well you know what i mean.Lots of love to you all.xxxx

tgal
03-08-2011, 12:48 PM
Sending good thoughts your way Amanda! Miss you

GoodDog
03-08-2011, 01:20 PM
I wish you the best, Amanda. BTW, I have an Angel Oliver. Here's his picture, he's my best buddy!
http://img5.imageshack.us/img5/1929/olyver.jpg

I have such a fear of going to a new doctor that I usually can't do it. So many years of being dismissed and mistreated by doctors that don't want to work hard to help someone with a lot of problems. My current PCP wants me to see a local rheumatologist and I'm afraid he'll do what one did several years back. He tore up the note I got from another rheumatologist that said I have Lupus and told me that I didn't and I was just nuts. Can you believe a doctor telling a patient something like that, especially as sick as I had been??!! I'm afraid I'll go off on a doctor that even hints at it not being lupus because I know it is. When you don't have the diagnosis you're not treated with any empathy or taken seriously and that just isn't right!

Bonita
03-08-2011, 04:39 PM
I hope you soon come to the end of your journey with a positive diagnosis and they take you seriously. Where do some of these doctors get there medical knowledge. Does cracker jacks still give prizes maybe some of them found theirs on the bottom of the box. Bonita

mountaindreamer
03-08-2011, 08:16 PM
hi gooddog,

i remember when my only diagnosis was fibromyalgia....so many drs. "did not recognize" it, and i was treated like a mental case...then, as soon as i was diagnosed with lupus, all of a sudden, everyone jumps through fire to help me....you are correct, it is not right.

I went through 3 drs. before i finally found the first one that treated me with respect....even though i think she is wonderful, and she has always been very compassionate, it still took 10 years for me to get a diagosis. I always tested positive for lupus, but did not have enough symptoms to confirm the diagnosis. then after my 32 year old daughter was treated for breast cancer, i went into a huge flare that lasted for months, and my dr. made the llupus diagnosis. So, just hang on, keep your journal, learn all that you can about lupus, and also let us help you build up your confidence so that you can go to the dr. with the attitude of believing in yourself.

Hopefully, you will get a quick diagnosis.

Numpty
03-09-2011, 02:38 PM
Was checking in here to see if there was any news, Amanda! Hope that everything has gone well for you with your appointment, shall check back tomorrow!
Claire x

Angel Oliver
03-09-2011, 04:10 PM
Oh Gooddog what a cutie he is ahhhhhh such a pose for the camera too lol.I hear ya and wow if that would have happened to me id never have gone back again.You should have reported him.But today,i am debating on seeing anther rheumi.I am going to call my gp tomorrow and ask his advice,i'll tell you why in a min.If you get the courage to change and see a new rheumi do it.I understand though exactly why people dont,after all the fighting and uphill struggle to actually get one doctor to believe you are actually sick is bad enough,but to find a doctor who believes what you think you know is traumatic when they go back on their word.For me,i feel my trust in him is gone.Keep reading this.Thanks for reading this and let me know how you get on.
Thank you Bonita,but i feel ive many more years to go yet,i came away feeling deflated AGAIN!!Phyllis your doctor sounds like a good one,making sure even though your bloods were positive she ruled out the other illness's to prove you had lupus.Numpty thanks for caring....this is what happened......

Got to the appointment and a lady was sat there.She said to me have you got lupus too.She pointed to my hands where i had a speckled rash and told me her story.I said well M.e is the dx with fibro srgrens etc.She told me how good 'our'doctor is how he is the best and we got talking how many years it takes people to finally get a dx.I told her what id been through so far and you know she helped me through the appointment telling me exactly what to say n how to say it.I told her about my gp asking me to ask the rheumi today for lupus dx and she said well he should be doing that n not you.I explained about how the doc treats me differently to how he treats her,as i realised from our chat.
Anyway i went in and felt confident because she gave me some courage and at the end of the day im passing on a message from my own gp.He wouldnt have it.I told him my gp has wrote to him 3 times.He didnt know who my doctor was,never heard of him.my heart sunk.I knew then another wasted appt.My gp must have lied to me.He never wrote to the rheumi.I stood my ground and explained about my past history with P.E and the recent pleurisy and about the criteria i fit.He said about the bloods not fitting,i said well you dont go on the lab work,you should go on my history,my symptoms(bare in mind my last blood test was about a year ago or so).He then said about a rash,i told him i have the rash,except no facial rash today and that its always light anyway.I also said that not all lupus patients get the rash.I could tell he wasnt going to budge and i yet again was wasting my time.He then checked my chest and said i was clear.I said i know because i havent got pleurisy now.No matter how hard i tried to be confident and put my case forward,he would not listen,he kept saying only certain groups of people....i forget the rest as i felt deflated.I said i dont want to be the statistic who gets a dx in 20 years i want it now.He then said you have the fibro and srogrens dx.I said but you told me all these symptoms were M.E????So now hes blaming the srjogrens.He's increased my plaquenil to 400mg and the morphine patch the gp will increase.So basically another crap wasted poo of an appointment.Thing that hurts is my gp wanted him to confirm lupus,now its not M.E its srjogrens.Round n round in circles i go. The appointment lasted 4 minutes.(I did tell my gp he would think im lupus addict and my gp promised he would writeto say the gp asked he question).
Tomorrow i will call my gp who probably wont call me back till Monday and i will tell him what happened.SO.....whats my next move?

love
Amanda.xxxxx

Angel Oliver
03-10-2011, 06:09 AM
Spoke with gp told him what happened.Dont think he liked the things i said.I feel low.x

tgal
03-10-2011, 07:44 AM
Hi Amanda! I am so sorry things went bad for you. I just hate doctors anymore. I really do. I promise it will get better. I wish I could say when but one day someone will really listen. Until then please know that we are here for you

SandyR
03-10-2011, 08:05 AM
what a frustrating experience. I don't suppose you got that woman's #? You need a patient advocate there with you and she sounds like a good one. I hate that these doctor's think we are telling them how to do their jobs and shut down. How can he possibly see anything about your health in 4 minutes? That's not even time to boil an egg! What you do next is this - brush it off. Move on. He's not helping you and unless you are dying in the hospital it doesn't seem he'll even open his mind to the fact that you might actually know what's going on with your own body better than he does, especially in the whole 4 minutes he spent with it. Refocus on where you know you have forward momentum - the GP. Clearly he is aware that your symptoms are pointing at Lupus. If he doesn't want to be the one to pull the trigger on the diagnosis then perhaps he can point you toward another Rheumy that he likes. And ask him for a copy of that letter so you can take it with you on your appointment so if the next doctor says he didn't get the letter you can say oh lookie here doc, I happen to have brought a copy along for you in case it got lost in the post. (((hugs))) hang in there.

wrightrs
03-10-2011, 11:27 AM
So sorry you are being treated this way. I think you need a new rheumy. Sandy is right you need a letter to take with you. I know how frustrating it is. They never listen.

Angel Oliver
03-10-2011, 11:46 AM
Mari,thanks for caing.I saw that glimmer of hope and wuuuuuuuuuuuuush its gone lol.Theyre so cruel to play these games.I hope you are coping ok.
Sandy,no i didnt get her number as she was a patient.She told me she was lucky as her butterfly rash was out and her bloods were negative so the doctor....lol...my doctor gave her the dx.I told my gp today,how can anything happen in 4 mins?I think he thought i go,get undressed in a gown then focussed on for half an hour.NOPE! Walk in sit down talk out.End of.I said i wouldnt mind if it all was explained to me.But i told him i know all about M.E,Srjogrens and lupus.I said that they are other symptoms being left and not in the other diagnosis,so to me its a rush job.But i said it better.I really got the impression i was an ungrateful attention seeking time wasting patient.I could tell by his attitude.I did actually ask first time round for a letter.He didnt like the fact the rheumi didnt know him lol.Think i hurt his ego.But my gp is nice.I realise he has tried to help me.But it seems the people im passed too are far too busy and how dare i question their professional judgement.Well i do because otherwise 2005 id still have the nervous label.So thats why i talk back and try to get answers.Yet they dont like it.Thanks for caring and i hope you are doing well.
Rebecca yes i know and i was prepared to go for it.But the conversation today with my gp,sounded like hes done all he can,the rheumi is the expert end of.Oh and the comment about im the best looked after 41 year old who has had more tests than most,hit me to the core.I told him,ive had appointments but not many tests lol.Asthma clinic are fab,eye clinic are fab,rheumi=nil point.Hope you are feeling better from your fall.Love n hugs.
thanks everyone.
Love
Amanda.xxxx

iseedeadmonkeys
03-10-2011, 01:02 PM
And if that dont help, im kidnapping you and taking you with me in may!!!!

Then i shall stick a dr infront of you and kick off til they see you AHA

mountaindreamer
03-10-2011, 08:39 PM
amanda,

don't you dare go back to that rheumi.....how dare him say that to you. he is stumped by your case, and his ego won't alllow him to admit it. he doesn't know how to help you, so he is trying to make you question yourself. You have worked too hard, and you have come too far to let this idiot make you doubt yourself again....chin up, my friend....this is his problem, not yours.

I am glad that he raised your plaquenil to 400 mg...at least he did something that might help you feel better. but, there is more that he can do. I don't know why some drs. won't use their minds and think of ways to help people....if we don't fit the definition perfectly, then they are closed minded to helping.

I have a suggestion....can you see if there is a lady rheumi who you can see. I am finding that female drs. are more compassionate and willing to search for answers when they don't know....they don't have the "male ego" (sorry whl guys,,,,,you know i love all of you, and don't incude you in this category) that gets in their way. All but one of my drs. are now females....i find it so much easier to have a conversation with them.

also, i always start the appointment while sitting in a chair....i don't sit up on the table. I will get on the table if the dr. asks me to for an exam, but otherwise i stay in the chair. sitting in the chair keeps you more at an equal level with the dr. Once you get on the table, then you are the patient, and you are at a disadvantage. I just tell the nurse that i am more comfortable in the chair, and they never have a problem with it. Just an idea that you might want to try at your next drs. appt.

when you find the right fit with a dr., you will know it, and you will feel better. it is not your fault that these drs. skipped class on the days that compassion was taught.

hang in there...remember to trust yourself.

tons of love and hugs from accross the water.

SandyR
03-11-2011, 07:24 AM
I have a suggestion....can you see if there is a lady rheumi who you can see. I am finding that female drs. are more compassionate and willing to search for answers when they don't know....they don't have the "male ego" (sorry whl guys,,,,,you know i love all of you, and don't incude you in this category) that gets in their way. All but one of my drs. are now females....i find it so much easier to have a conversation with them.

also, i always start the appointment while sitting in a chair....i don't sit up on the table. I will get on the table if the dr. asks me to for an exam, but otherwise i stay in the chair. sitting in the chair keeps you more at an equal level with the dr. Once you get on the table, then you are the patient, and you are at a disadvantage. I just tell the nurse that i am more comfortable in the chair, and they never have a problem with it. Just an idea that you might want to try at your next drs. appt.

Excellent points! Two thumbs up. I'm going to use that chair advice myself.

Angel Oliver
03-11-2011, 01:11 PM
Jane thanks its so nice when people understand and truly care.Much appreciated for all your help.Phyllis i giggled at the table comment.This is my point i made to my gp.Ive never been examined! I walk in sit down for 3 mins then the appointment is over.I asked my gp is this a proper appt which i wait 6 months for? My gp truly thought im laid out,examined etc...this has never happened once as the rheumi is waay too busy.But yes a female rheumi would be so much better i know.Thing is my problem now is i got the impression from my gp that ive come to the end of the road and seen allot of doctors and im ungrateful.But at the end of the day the doctors are not doing what they should be and thats listening to my history,taking bloods and examining me.Instead its the total opposite.Thanks so much for your help always Phyllis.Ive been looking for you lol on fb.
Lots of love
Amanda.xxxx

tiggerlishus - Heidi
03-12-2011, 03:39 AM
i really do thinknig getting your gp to reffer you to st thomas lupus unit in london would be a good move!! i know i am diagnosed my local remui was not very helpful and far to busy to give me right care so i spoke to my gp and he reffered me there and things have been much better since! if not i'm there in april you come with me adn we're blockade our self in till someone see's you!! xxx

Angel Oliver
03-12-2011, 03:29 PM
Hi Heidi,
Thing is at the moment i get the feeling my gp has had enough of me ,im the smell that wont go away.So i dont know whether he would send me or refer me.Maybe i should ask when he calls me.But i have to stick to my guns and tell him i dont want to see that rheumi again.I didnt felt easy in the appointment at all.I could see his face like how dare you question me.Its getting me down now.Brick wall is all i see lol.Thanks so much for caring.I may take you up on that offer if nothing happenes.So many questions n fears about my gp not believeing me.After all he doesnt see what actually happens at my appts.I walk in sit down 3 mins im out end of.Thats not an examination,is it?
love
Amanda.xxxx

GoodDog
03-12-2011, 04:12 PM
I went without a diagnosis for years and my HMO doctors just made me feel like a mental case. I finally went to a specialist out of the system and paid out of pocket. She was able to diagnose me after the second visit. The problem then was that my HMO wouldn't accept the diagnosis because it didn't come from one of their doctors. We just can't win!! When I finally quit the HMO doctors accepted her diagnosis though. I think they just wanted to get rid of me and it worked.

Angel Oliver
03-12-2011, 05:35 PM
Oh really? Wow i am so glad to read you finally got the dx.Thing is dont get me wrong.Maybe i dont have Lupus and they re right,but the knowlegde ive learnt and the appts which last 4mins to me doesnt feel like a proper dx or examination.I will accept what they tell me when they listen,actually look at me and examin me taking into account my history.Even if its mumps i dont care,cause i dont want it to be lupus,but to me....its pointing to it.Are you in the USA or UK? I may have to find some courage to ask my gp,but something tells me he wont have it.He sounded so mad with me.Makes you so fed up.Im not a trouble causer...i want to move forward and live instead of stuck in a rut like i am with gueswork!!
Thanks for caring.
love
Amanda.xxxx

GoodDog
03-12-2011, 08:47 PM
I didn't ask my doctor, I went to someone a couple of hours away that was recommended by a friend with AI. I actually didn't even think about it being Lupus and after a bad experience (Dr, tore up the papers from the Rheumy) when I told my HMO doctor I didn't mention it again for another 10 years. Late last year I went back to that same Rheumy and she told me that she gave me that dx 10 years ago and why hadn't I been seeing a Rheumy. So I spent 10 years with doctors telling me it was in my head, so to speak. She spent a lot of time with me each visit. The first one was over an hour long and $800 out of pocket.

Angel Oliver
03-13-2011, 03:11 PM
wow you know some of these doctors so have the god complaex but i do know there are some good ones out there too.I am sorry you have been put through this,but glad you know for sure now.Lots of love.xxxxx

GoodDog
03-13-2011, 03:56 PM
My point should have been clearer and asked if you are able to see a doctor out of the system you're now using and pay out of pocket? One that is well known to specialize in AI diseases? Can you do that in the UK? It seems when I pay in cash I get much better care. Too bad those days are over. LOL

Just a thought: If you can't go out of the system what about researching Rheumys and telling your GP which one you want to see instead of just telling him you don't want to see that one? It keeps him from having to do any work. LOL

mountaindreamer
03-13-2011, 04:43 PM
hey angel,

i think heidi has a great idea...i think you should go with her to the speciaists in london. If they can't see you then, i bet they will make an appointment for you. They know how lupus can be hard to diagnose, and they know how these diseases can make a person desperate....it happens to me when i go into a bad flare....

if you go there and talk to them in person, take a copy of your records with you, i know you can find someone who will help you....it is certainly worth a try.

I hope you can make this trip...

ha ha ha...i look for you too on fb, but seldom on at the same time.

tiggerlishus - Heidi
03-14-2011, 03:11 AM
hay angel sorry only jsut saw your message i see him seeing you as a bad smell as a good thing in the sense he will be more likely to refer you to st thom's don't give up don't feel dishearted your are getting there even if it is toddlers steps and we're all here backing you all the way!!

loads of cross country love xxxx

Angel Oliver
03-14-2011, 10:42 AM
Well he hasnt called me yet,so yes very little baby steps which feel like a lifetime of them hahahah.Thanks allot Heidi.
Lots of love
Amanda.xxxx

tiggerlishus - Heidi
03-15-2011, 06:28 AM
Well he hasnt called me yet,so yes very little baby steps which feel like a lifetime of them hahahah.Thanks allot Heidi.
Lots of love
Amanda.xxxx

if he is still not rung today i would ring him tell him how you feeling i must admit i normally end up in tears not on purpose but always seems to work wonders! keep us informed and remember we're always here xxxx

Angel Oliver
03-15-2011, 08:19 AM
Heidi,
He wont call i will expect to hear from him ,well maybe 10 weeks or so.I had to laugh today,my nurse has had to discharge me due to the cut backs and i read her letter hahahaha,sleep clinic declined by gp,proper lupus exam,declined by doctor as she is under rheumatologist, another person i saw says, informed gp symptoms due to lupus......yet im finding it so difficult.Once again,if i have not got it i will be happy,but i have seen no eveidence from professionals as yet to proove otherwise.Im usually crying when i even say hello hahahha im a mess,so embarrassing when our lives are in other peoples hands.Oh also she put in the report that i have been on the M.E fight for life thing....this place you sat in a group and got depressed listening to the others hahahaha,yet they were going out clubbing,working,sleeping etc was a waste of time really and i came away with a stiff neck as they had you excercising like an athlete hahaha.This is the place my gp called me and said,i found a ground breaking scheme for you to go on.I went on a course just for you to see if you would benefit from it.My heart sunk as i told him ....i done it twice!! That was when i realised,after waiting 8 weeks from my gp,that my gp isnt really iterested,i am just a number !
Hope you are coping ok Heidi .Thanks for caring.
Lots of love
Amanda.xxxx

mountaindreamer
03-15-2011, 02:51 PM
oh amanda,

just another case of your drs. not paying attention to you, and not caring that you are in so much pain. Have you seen any improvements since you increased your plaquenil to 400 mg? i hope so...spring is almost here, and i hope you will be able to get out and enjoy "daisy's flowers".

love to you, my friend.

Angel Oliver
03-15-2011, 04:22 PM
Hi Phyllis,
How are you today? Hope you are resting as its mtx night isnt it? Well so far i feel a bit sick,so i will wait for it to pass,then hopefully i should feel improvement.Thanks for always caring.
Love n hugs
Amanda.xxxx

SandyR
03-16-2011, 07:05 AM
Amanda,

Do you own a camcorder and have friend that can follow you around? I think you should start a video blog of your daily symptoms and if possible of what happens at these appointments and then sit your doctor down to see the link when you go to him again. If seeing is believing and a picture is worth a thousand words then he would have no choice but to understand what you are experiencing and want to help you. I'm only half-joking with this. If it were really possible I think it could be a very successful blog for those of us who JDLS.

Sandy

Angel Oliver
03-16-2011, 01:39 PM
Sandy ,
you know thats a good idea.Maybe i will think about it as im so fatigued n tired today.I have a photne with a video on so can do it myself.But you know in reality,he wouldnt be interested in watching it.Let me see what happens.Thanks for the idea.
Hoping you are feeling barable today.
Lots of love.xxxxxx

tgal
03-16-2011, 01:47 PM
LOL Who needs a person around. Wait til the days you can't get off the couch and just sit it on a stand! LOL

Ya'll all make me smile. Thank you!

Angel Oliver
04-04-2011, 09:50 AM
Please read my new thread which continues from this....The End! Im writing it now.x