Good Evening all. I've been spending more time At the Fribo site since I know for a fact I have that. I had yet another MRI (of the knee this time), and again everything came back negative. I have a titer of 1:40, which is nothing I know. I did show positive for the hla-b27 protein. I have widespread pain. So what do I have?? Do I have anything?? I'm sick and tired of not having any answers. I'm thinking maybe its all in my head. I'm just venting and feeling sorry for myself.
-rosie
I know the process of figuring out what’s happening is annoying and frustrating. You know your body better than anyone else. Keep fighting until you get answers. It may take a while (took me three years) but don’t give up. I hope you get some answers soon
Hi
You can vent all you wants too. I suppose you can feel sorry fo self and I don't mean to be mean but it won't help. When I was diagnosed with SLE 1 1/2 year ago I had a" pity party" for two days and then I decided that wasn't going to do me any good mentally or physically. Try to stay positive.
"don't be mad with me"
Cindy
Hi Rosie
Its not all in your head - fibro and lupus go hand in hand many times. Treat yourself as if you have Lupus - diagnosis or not. You know how you feel and you know your pain -
Rosie
I have been where you are and look at it this way. The treatment for Fibro is most often times the same treatment for lupus. So you are treated the underline causes of the disease anyway. I agree, don’t stop until you get some answers. You know your body the best. My suggestion is to stay with the same doctor for a while and let them see what you are struggling with. Sometime they have to see it with their own eyes before they will give you a dx. Just be your own advocate with your symptoms. My titter was the same as yours, only one time, and has been negative ever since. I also have a negative ANA. But I have both cutaneous and Systemic lupus and have had it since I was 17, but only got dx 7 years ago! Yes the journey can be very frustrating along the way!
Just keep fighting for answers!
I'm not mad with you :) You're right, the pity party won't help. Just something I had to do to get over it, I guess. Thanks for your concern.
freightliner said:
Hi
You can vent all you wants too. I suppose you can feel sorry fo self and I don't mean to be mean but it won't help. When I was diagnosed with SLE 1 1/2 year ago I had a" pity party" for two days and then I decided that wasn't going to do me any good mentally or physically. Try to stay positive.
"don't be mad with me"
Cindy
Hi nates tired mom
I thought after I wrote that that I shouldn't have.
didn't think it come out the way I meant to. I'm glad you were not offended.
Cindy
Hello, don't get discouraged ? that's what the devil /satan want you to do !! DON'T !!! it is okay to vent here we are always here 24/7/365 at anytime . Buckle down and take the ride , it is bumpie . In time you will have the results that you can deal with , just keep the FAITH of Jehovah (God) , he has your hand or your high power ...Think positive ??? Hold your head high and hold your pride .... Beverly L.
Hi! I also have the b27 protein and pain and various others. Doctors are still not sure what it is and it has been the worst part of this journey. I was originally at kaiser and they said i had ‘seronegative arthritis,’ i left there and i went to fancy doctors and i found i gad ankylosing spondylitis and lupus. Long story but i left the fancy doctors and went back to kaiser and now being told probably not lupus. Ugh!! So now ive settled that despite the doctors disagreement, i feel with my own research, feelings, and talking to others, i believe i have lupus. No matter the diagnosis my treatment will be similiar and i need to take care of myself all the same. We all need moments of feeling for ourselves. Going through this is hard! Take care, and i hope the doctors are able to get closer to diagnosis.