hi my name is Andi im 31 years old ,i live with my husband and two children . I was 17 when i was diagnosed with SLE . since then i have had lots of flare ups especially when i was pregnant, i suffer with the rash on my face ,joint pain ,tiredness depression etc.... I have moved house quite a bit so had different specialists but went to the hospital today for a check up and get results from endless tests, and had another different doctor and because my bloods are negative told me perhaps its not Lupus . he has really upset me im so confused been on prednisilone in the past and am on planqenil at the moment has anyone else been diagnosed in the past and then been told by some rumey you never seen before " oh it might not be Lupus " cause your bloods are negative but will keep you on the medication he has really got to me .my mum told me to come on this site and chat to some fellow lupus sufferers so here i am
hello all
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Welcome to the site.
This doctor has showed him/herself as not very educated about lupus if he's willing to say it might not be lupus due to one negative batch of bloodwork while you're on medication. It's not uncommon for antibodies to disappear while on effective medication.... & unfortunately it's not uncommon for doctors to have many misconceptions about lupus. You have to have faith in yourself and your past doctors and just remember and point out all the past results/problems to this doctor who doesn't know about your history with lupus. It would be *nice* to not have lupus, but it's not a diagnosis given lightly, especially to a 17 year old!
It's too bad you've had to move around so much and go through so many doctors. With any luck you'll be able to find a better doctor to see at this present location that understands lupus a little more, and treats symptoms regardless of bloodwork. At least this one agreed to keep you on the medication - if he hadn't then I'd say RUN to find another doctor!
Take care and welcome to the site! Hope you're feeling reasonably well...
This doctor has showed him/herself as not very educated about lupus if he's willing to say it might not be lupus due to one negative batch of bloodwork while you're on medication. It's not uncommon for antibodies to disappear while on effective medication.... & unfortunately it's not uncommon for doctors to have many misconceptions about lupus. You have to have faith in yourself and your past doctors and just remember and point out all the past results/problems to this doctor who doesn't know about your history with lupus. It would be *nice* to not have lupus, but it's not a diagnosis given lightly, especially to a 17 year old!
It's too bad you've had to move around so much and go through so many doctors. With any luck you'll be able to find a better doctor to see at this present location that understands lupus a little more, and treats symptoms regardless of bloodwork. At least this one agreed to keep you on the medication - if he hadn't then I'd say RUN to find another doctor!
Take care and welcome to the site! Hope you're feeling reasonably well...
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1,471 Posts
Hi Andi
Welcome to the site but Im sorry about what brings you here. What a terrible shame you have met up with one of life's cretins
You have been diagnosed and treated now for 14 years and along comes 'Mr. Wonderful' and says that based on one set of bloods you may have been misdiagnosed all of these years?
I dont blame you for feeling upset because that kind of consultation would upset anyone. Dont let his comments get to you too much. As Maia says, at least he is keeping you on medication so while his comments are upsetting, he isnt jeopardising your health. You must be worried though about your future relationship with him:worried:
Is there any way you can get hold of your past records? It would be important to have copies of these especially if you are moving around so much.
How are you feeling generally? Did you get the tests done because you were feeling poorly or were they routine? Blood tests dont always match up with the way we are feeling and a good Lupus specialist will be aware of this.
If you have lost confidence in this doctor it might be worthwhile considering another referral if thats possible. You can use the Find a Lupus Doctor forum here to ask others for recommendations.
Welcome again and I look forward to getting to know you. Hang in there Andi. Believe in yourself - you know your own body and medical history.
Joan:rose:
Welcome to the site but Im sorry about what brings you here. What a terrible shame you have met up with one of life's cretins
You have been diagnosed and treated now for 14 years and along comes 'Mr. Wonderful' and says that based on one set of bloods you may have been misdiagnosed all of these years? I dont blame you for feeling upset because that kind of consultation would upset anyone. Dont let his comments get to you too much. As Maia says, at least he is keeping you on medication so while his comments are upsetting, he isnt jeopardising your health. You must be worried though about your future relationship with him:worried:
Is there any way you can get hold of your past records? It would be important to have copies of these especially if you are moving around so much.
How are you feeling generally? Did you get the tests done because you were feeling poorly or were they routine? Blood tests dont always match up with the way we are feeling and a good Lupus specialist will be aware of this.
If you have lost confidence in this doctor it might be worthwhile considering another referral if thats possible. You can use the Find a Lupus Doctor forum here to ask others for recommendations.
Welcome again and I look forward to getting to know you. Hang in there Andi. Believe in yourself - you know your own body and medical history.
Joan:rose:
Dear Andi, I have heard of many people in your situation. Some Docs. just do not get it! I am a long term patient and my Daughter was diagnosed like you at 17. I go to St. Thomas' where the blood tests are most definitely only part of the picture. They most definitely do not always reflect the way we feel, and you can certainly have confidence that this is true as so many experienced people here will back it up.
Let us know how we can help.
x Lola
Let us know how we can help.
x Lola
thankyou
thank you for your replys its good to be able to talk to other people who are going through the same thing . its been a roller coaster since being diagnosed, alot of my tests were positive all those years ago, but over the past six years since having my daughter they have been coming back negative, other rumeys ive been under told me that in some cases tests can be negative but they have still monitored me and treated all the symptoms with medication, its horrible tho you start thinking that people think you are a fraud which is not the case some days i can barely walk im in so much pain and i get so tired . but as i said its good to come on here and get it off my chest, i feel a bit better just by talking to you
Andi xx
thank you for your replys its good to be able to talk to other people who are going through the same thing . its been a roller coaster since being diagnosed, alot of my tests were positive all those years ago, but over the past six years since having my daughter they have been coming back negative, other rumeys ive been under told me that in some cases tests can be negative but they have still monitored me and treated all the symptoms with medication, its horrible tho you start thinking that people think you are a fraud which is not the case some days i can barely walk im in so much pain and i get so tired . but as i said its good to come on here and get it off my chest, i feel a bit better just by talking to you
Andi xx
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