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mayte

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 #1 
I have been diagnosed with Lupus a week ago!  I have read so much about this horrible disease... and I am so scared!!! My mind is going insane!  My doctor did not referred me to a specialist.  He told me to loose 30 pounds and to see if the pains go away so in 3 months i should go back to see him.  Should I schedule my own appointment with a Rheumatologist or wait three months?  My DNA (DS) antibody, c-reactive protein, cholesterol was high and I have had pain in my joints for a while now. My ankles are swollen. My body aches! Not sure what to do... I am so confused but very thankful to have found this place!  I appreciate any advise!  Thank you! :-)
Robinj

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 #2 
I am confused. What kind of doctor dx'd  you?  You should only be dx'd by a qualified Rheumatologist.
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mayte

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 #3 
Thank you for your reply.  My regular doctor has been checking my blood work every 3 months because he noticed that my DNA (DS) antibody is high and that most lupus patients have those high levels in the blood. However, he said unless you experience any symptoms of lupus such as pain in joints, swollen joints, then he wouldn't worry about it.  For the past 6 months, I have had those symptoms so my general doctor said is a Lupus flair up.  He prescribed a pain medication for my joints and told me to come back to see him in 3 months for a retest but he did not refer me to a Rheumatologist.  That is why I am so confused!
Robinj

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 #4 
You need a referral to a Rheumatologist. As I said, you should only be dx'd  and TREATED by a qualified Rheumatologist.                 
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Cakelady

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 #5 
Only a rheumatologist or a dermatologist can dx and treat lupus if I am not mistaken
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Robinj

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 #6 
The thing that bothers me if she was dx'd with lupus, why didn't this doc start her on Plaquenil?
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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. 
Baker1

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 #7 
I had gone to the walk-in clinic and that doctor said looks like arthritis, ran a lot of labs and said follow up with my pcp at the end of the week. So I saw my pcp on that Friday and she said arthritis for sure and possibly lupus, but not all the labs were back yet. But she set me with a rheumy about a month later and confirmed lupus. My pcp had put me on prednisone and the rheumy's put me on Plaquanil which caused an allergic rash after about 3 months.
I think the dx could come from the pcp if they feel comfortable about giving it, but a patient still needs to go to a rheumy. A doctor just can't say you have lupus lose some weight and come back in 3 months. Forgive me, but I call that doctor a quack.

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Diane M
"I was chasing my dreams, but tripped over reality and busted my head on the truth."
Robinj

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 #8 
Agree Diane
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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. 
Cakelady

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 #9 
I agree to but it's getting to the point that it's hard to take people seriously. I am so cold and I hurt so bad but I take the time to respond to someone and they can't even be thankful? It almost makes me not want to respond to any posts unless I know who is posting
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mayte

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 #10 
Thank you to all of you who replied to my concern. It makes me feel that I am not alone through this process. I am in the process of finding a rheumatologist near my area. Baker 1, totally feel your pain. Thank you for sharing your story. Cake lady, please don't think that I'm ungrateful. I just got home from work, fed the kids so I'm in bed reading these comments. Thank you again for all your help. It means a lot.
mayte

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 #11 
Hope you all have a restful night and a good day tomorrow!😊
Mr. Bun

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 #12 
Mayte?

I think what concerns everyone...is the flippant way your doc is "treating" you.  Lupus takes a looooooooooong time (usually) to diagnose.

Your primary care doc doesn't seem to be informing you of the road needed to travel...in order to dx or to rule out lupus.

And yes......there are a lot of posters.....who post once....then poof!!  asking for help, which is given......then never to be heard from again.


mayte

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 #13 
Mr. Bun, I can understand...that's why I'm going to see a rheumatologist ASAP....hopefully they can find the right diagnosis for my issues. Wether is actually Lupus or not, I'm currently experiencing a lot of joint pain and inflammation. Thank you so much!
UhOh

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 #14 
Hi there Mayte,
Do not despair. One day at a time and this is a wake up call (hello ?!) to take care of your health. My first step was changing my diet and getting a proper dx. Now i take the PQ and it helps with some symptoms, though i feel wierd. I now have to address my worsening gum disease which i have been afraid of. I try to keep things in perspective, not work too hard or freak out, and just try to enjoy life. I went on a radical elimination diet after a severe flare. Now i have reintroduced some comfort foods once a week and i feel pretty good.
I actually had the urge to go rollerblading today for the first time in 6 mos (didnt go but wanted to). I have a lot more energy back and laughing more.
Dont worry, just take the steps and do your best.
Warm wishes, UhOh
mayte

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 #15 
UhOh, thank you for your encouraging words. It means a lot. So happy you had an urge to go Rollerblading. That's fantastic! And yes...one day at a time. I have an appointment with the rheumatologist in 3 weeks. I'll keep you guys posted. Thank you all! Hopefully when I feel better, then I'll have the urge to go do Zumba, my favorite!💗💗
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