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Discussion Starter · #1 ·
Maybe you guys can help. I have been to the doctor a gazillion times in teh past 3 years. I'm 25 years old right now. It all started because i was experience Raynauds and wasn't quite sure wat it was so i asked the doc about it. She then went on to test me for a bunch of stuff. My blood work came back with a positive speckled pattern ANA. So.. they brought up lupus. However, i was told i don't have lupus, but i was sent to a hematologist anyways. He told me i had lupus tendencies?? wat the heck does that mean? So.. a few months later i got these nodules things on my knuckles and they hurt whenever i touched them, and again i got my blood work done, positive speckled pattern ana, but not lupus. I'm always tired and i feel that something is wrong. I'm continuously at the doctor. For things such as burning with i pee, headaches, fatigue, depression, anxiety, all sorts of stuff. I feel like i'm losing my mind. Is something wrong with me.? I got another ana ran and it came back negative?? so wat is going on?? does anyone know ?
 

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Hiya... a positive ANA is a good start but not conclusive... do you have the values of the tests? Some people here have had negative ANA throughout and diagnosis was based on skin biopsy. It sounds as if something is going on. Are you seeing a Rheumy who knows about auto immune disease? I have MCTD which means I have a positive RNP and raynauds, overlap of lupus, scleroderma, hypothyroid etc etc so there are quite a few variables that can still give you the joint pains, fatigue, headaches etc... time to push for some answers I think...:(
Claire X
 

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The Other Illinois Tammy
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Hi and welcome to the site. You sound like there is something going on but it will take time to figure it all out. I know that this does not help but it sometimes takes a long time to find out what is going on when lupus is involved it acts like so many other diseases. You may not have lupus but some kind of connective tissue disorder. I know you feel like you are going crazy but hang in there and keep going to the doctor.
 

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Discussion Starter · #4 ·
Thank you for the information. I went to a physical therapist yesterday who thinks i might have a degenerative shoulder joint somehow? i feel like all this stuff is related and at some point all these pieces will create something. I did see a rheumatologist and when she tested me and my ANA came back negative, she said that until i have nodules or any other symptom that there was no need to worry. I feel like i've gotten a gazillion different answers from all sorts of docs. It just all doesn't make sense to me. If something is wrong i want to treat it the best way i can so i don't make anything worse.
 

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Pamela b
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So sorry for you

Hi
I am also very new to this site and feel so sorry for you and so much empathy as well
I spent 3 years in exactly the same position as you. I was told over and over again that I was depressed and healthy otherwise despite a lot of abnormal blood tests and starnge episodes of illnesses. It is a very long story but this year I decided I needed to start to fight to find out what was wrong with me. I paid to see a rheumy ( no idea when he was booked by the Gp if he was good or not ) and he said at once from the tests done, symptoms and history I did have Lupus.

I would keep going to them , keep lists and diary of your symtoms and ask for a referrals They will find out what is wrong and dont be afraid to ask questions ( I was ). It is your health and your life
I am so sorry and everyone here as been so supportive I dont know how I would manage without them all
Take care and I am thinking of you
Pam
 

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I am sorry to hear that you aren't feeling well I hope that you get relief from your pain soon. I was told since July of 2004 that I was "Lupusie" as my Rheumy called it because I only met a few of the critria for the diagnosis of Lupus. Finally I was offically diagnosed with it last year. Most of the time Lupus does take a long time to show up offically in test and to get all the symptoms but don't feel discouraged. Don't let the doctors put you down or let them make you think that you're crazy because you AREN'T!

Things will get better you just have to keep your head up and stay positive.
I wish you the best of luck!
 

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Hi AZ and welcome to the board. There are times you just want to shake the doctor to get a straight answer! I totally understand. I am one of those negative ana people mentioned earlier. Had the doctors tested beyond the ana, I would have been diagnosed 20 years earlier.

Check out the 11 criteria which are required to make a diagnosis of lupus. See which ones you match with. IF you have 4 or more, with or without lab work, you have a diagnosis of lupus. Has the rheumy you saw tested beyond ana? There are several other blood tests which are more specific for lupus than just ana.

Start keeping a journal/log of the symptoms you have every day. If there is pain involved, rate it on a 1 to 10 scale. Include all the symptoms you are having, ie shortness of breath, painful joints, rashes, fevers-take your temp and keep track of it, and anything else going on. Is your fatigue level making you literally live in bed on some days? At the beginning, I would judge a day by how many naps I had to take before noon. Anything under 3 was considered good.
Take this with you to your doctor visits and go over it. Have them explain to you why this symptom is happening, and they aren't taking it seriously.

Something is going on, and you need to be attended to. Take care of yourself, eat well, get your rest, learn to live inside between 10 and 4 when the sun is highest.

Good luck, and we are here for support.
Sally
 
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