View Full Version : New to Lupus
03-04-2011, 05:34 PM
Hello everyone. I wanted to introduce myself. My name is Sheila. I am brand new to all this, being diagnosed last Friday. My family are all in shock as we did not expect Lupus.
I have been having alot of strange things going on for quite a long time and was diagnosed with connective tissue disease and fibro in 1991 after a silicone breast implant ruptured in my chest.
I am also in Menopause so just assume all my aches and pains were partly due to this. After paying my GP a visit he suggested i see a Rheumy for a follow up and said even though blood work he had done looked normal he felt like i might have Lupus.
Well long story short. He made me a appointment himself and i was able to see the doctor within one week. We discussed all of my symptoms then he gave me a shot in one knee and handed me a paper for the lab. Then he gave me a script for Plaquenil and told me he would see me back in five weeks unless i needed to see him sooner.
Three days later his nurse calls me at home and tells me that my double stranded Anti DNA has come back positive and i have Lupus. She then tells me to continue the medication and keep my appt in five weeks unless something new comes up.
When i asked about all of the other blood work she said it was within normal range.
I have been reading through the forum and see that most people have a hard time getting a dx for Lupus, so i guess my question is why was i Dx so quick with only the one test positive. My husband thinks i'm dealing with a quack but he is supposed to be the best doctor for this in our area. I am a very anti medication person, but my daughter who is a RN has insisted i start the Plaquenil so i have. Any feedback that anyone could give me would be great for i am really stressed over this situation.
03-04-2011, 05:55 PM
My history is similar to yours and I also had silicone implants. Mine were removed in 1992 and I was diagnosed with AIs then. In 2000, I think it was I was diagnosed with Lupus but some doctors said I didn't have it. I think some doctors are more cautious about giving the diagnosis then others. Maybe because they think if we know we'll feel sicker.... I actually heard that from a doctor.
Welcome to WHL. You'll meet some great people here. :)
03-04-2011, 06:11 PM
Thanks Gooddog, it sure is great to find other people who have the same things going on. No one in my family has any of these problems so none of us can really sit down and discuss it. My implants were removed in 1991. Boy if we only knew then huh? I could just smack myself silly.
03-04-2011, 06:35 PM
hello craftkeeper welcome whl we are all here to answer questions and even for you just to vent you will find we are good bunch of listeners from all over the world i am from sydney australia look forward to chatting to you hugs kim l
03-04-2011, 07:46 PM
Me too craftkeeper. I even worked for the Plastic Surgeon at the time (early 80s)!! No one in my family had anything AI until my sister had implants after I started having problems! I told her about them being tied to Lupus and fibromyalgia but she went ahead and did it anyway. Now she's suffering and way past the cute stage in life. We haven't talked in over 10 years so I don't know how she's doing now.
Hi again Craftkeeper (I commented on the other thread). I just want to make sure that everyone is comparing apples to apples when looking at heredity. Because AI diseases are so closely related you are considered having a family history if any member of your family had ANY of the AI diseases. If your family has a history of RA, Chrohn's or any of the 80 plus diseases then you are said to have a family history.
Hope that made sense because I am really tired and brain fog is settling.
03-05-2011, 07:48 AM
Good morning everyone and thanks.
I have been questioning family members that i can contact about anyone that might have Lupus in our family and found that an Aunt has RA.
You just never know whats going to pop up in life do you?
03-05-2011, 10:35 AM
I was told that a positive DS-DNA is a good diagnosis for Lupus along with other symptoms. It is rare to have a positive without having Lupus aleast that is what i found out from some really great specialist in seatle Wa. I have a dear friend that fly's there every few months she has AI and that is what they told her too.
03-05-2011, 01:51 PM
Thank you Kim,I and Michelefish. It really is good to have people who are going through the same thing to talk to.
I guess i am lucky to have such a quick dx. Just a little teed off that they felt like it would be okay to talk to me about it in five weeks. But i know that there are more people that are sick and he is the only one in the area. Anyway,thanks all
03-09-2011, 09:38 AM
Welcome to our lovely large family of the WHL and by reading the threads as your doing you'll learn so much as we all carry different symptom's and diseases from the Lupus itself.
Your Rheumo specialist sounds like mine does'nt like giving info out and sometimes it's like hitting your head against a wall. First of all if you suffer with seizure's which Lupus can give you if you start fitting more then you should come off the plaquenil as it can cause it, after 3yrs of being diagnosed myself and then finding out i was born with it, besides having loads of illness's all attached to the lupus including seizure's two forms and never found out till i was sent to a brilliant Dermatologist who started the ball rolling with blood tests and i only found out what i have below through two letters being sent to my GP telling him what i had and he gave me copies and no one would step forward and tell me if i did have Lupus itself until the lastime i saw the dermatologist and spoke with him and he confirmed it.
Before starting plaquenil your surposed to see ophthalomolgical specialist to get your eyes tested first to see if they're ok to start plaquenil and regular tests after of every 6mths, i had my eyes tested and i was ok to start it but i've still been refered on to the eye infirmary for next week.
I can't say if you have more than the lupus itself but when your ANA & ENA come in high i do know there's more involved i've got to have a DNA test next time i go in August to see my Rheumo but you also have have to take this into consideration Lupus is terrible for fluctuating blood reading, even though there could be more the test's could be showing negative, i was wore out and tied for 6mths and it took the bloods that long before they showed i was anemic and now i take zinc tablets and B12 Jabs.
I wish you all the best with your symtoms and keep we updated please and it will be nice getting to know you.
Hugs Terri xxx
03-10-2011, 03:34 PM
Hi Terry and thank you so much for your post.. I have read so many post from most all of the members and it seems that most have had such a frustrating time with Doctors.
I know alot of the younger people get tired of hearing this,, but honestly doctors are not what they used to be.. Sure we have all of these major breakthroughs in medication and treatment.. But it's totally lost on most of the doctors today. When my olderst daughter was five she contracted spotted mountain tick fever and almost died. When i took her to her pediatrician she had a fever of 105 and the doctor looked me in the eye and asked me what i thought was wrong with her? After i got through ripping him apart, he found out what was wrong quickly.. I think they should pass a bill that doctors should only be allowed to collect payment after a timely and correct diagnosis is made. Bet that would put them on the ball. Anyway, Terry i'm usually not this hateful but it just irks me. LOL.
03-10-2011, 03:58 PM
Yes a large majority of us have had a right game with Doctor's my rheumo wow tell me nothing, i get my info off my GP he gives me copies of the letter's but i do have an excellent Dermatologist and i can't fault him one bit, i suffer with manic depression and my psychiatrist i had to see for that was brill and i've just found out he's taken ill and he's leaving now, so lets see who takes over but i know i'm not about to sit and explain 25yrs of illness to him.
No your right about your daughter and that was disgusting asking you your opinion first but years back you did have doctor's on the ball and if you was admitted to hospital, it was one sister, a few proper nurses, not a calculation of nurses like today wearing all different uniform, absolutley disgusting.
You vent away mate because half the time i'm either aggressive and my hubby gets it or i'm balling my eyes out, it's all so flustrating for us all
and your right it is lol. xxx
03-11-2011, 06:51 AM
steve here from australia.
my rheumtologist is the best. his sister has lupus, so he has a vested interest in finding out the right stuff. a ds-dna is almost foolproof.
we talk about my level on every visit. the sooner you start on the correct medication. the sooner your body will level out. plaquenil takes a little while (up to 6 months) to build up levels in your body. keep taking it,and read lots. there is lots of usefull posts here to read.
03-11-2011, 08:12 AM
How you feeling today in your health and do you feel alot carmer, i just hope you days been abit pain free mate.
Hugs Terri xxx