The Dr's nurse just called and informed me that all the blood work he did last week came back normal. Hmm..I don't feel normal. My hands stay swollen, my hips still hurt, my feet are still swollen and my toes curled under and can barely walk. Does this sound normal to you guys? Now I am wondering what is wrong with me if I am normal? Well, I think I am normal!!!! My labs have been fine except for Sed Rate being quite high at times. I have sero-negative RA and have some crippling in my hands and feet.
This is diagnosed by criteria other than labs.
Ann
Do you have a follow up appt.? Did the nurse give you any idea of what's next? I hope she didn't just leave you hanging!
What tests were run?Yes she left me hanging. The blood test were for Ra factor SED, enzymes etc. So I don't know if I should see another dr. or what.Call back and ask them to send you a copy of all the lab results. Then you can educate yourself on what tests were run and what each one is for. You will also be able to see which ones he may have missed. Additionally, it always important to get a copy of all test results for your records, so when you go to different doctors you have the info to give to them.
I hope you do have a follow up appointment - if not, set one up. You need to go in and talk with the doctor and not drop it at this point. This is just the first step. When you meet with him, be thorough and ask about the symptoms you are having, about sero-negative RA, and if he doesn't feel this is RA, what are other possibilities. Push for answers and don't give up.
Hillhoney gave you good advice. You need to set up as follow up appointment with your doctor. I am seronegative and I was diagnosed on other criteria plus my sed rates and CCp go up and down like a yo-yo. Don't give up...give the doc a call and schedule a follow up appointment. Good luck, Hiking_gal
I totally understand how you feel. It took me a year because of circumstances and chasing a different diagnosis. Don't give up. It sounds as though you are feeling a little better so that is a relief to some extent. As a seronegative, I can tell you it takes a bit of time to sort out. Perhaps the doc can put you on Prednisone and see if you respond at least that would tell him if an inflammatory process is going on. Good luck, Hiking_gal
edited for spelling
hiking_gal2008-09-02 13:40:24I am right there with you. Don't give up find a Dr who is familiar with seronegative RA. I am taking information on it to my Dr from the Arthritis foundation. I have all the symptoms of RA except the crazy extreme high numbers in my blood work. I have done wonders on Prednisone, but can't be on it forever. I have 3 days left and then a week until I see the Dr. I am afraid I will be miserable for that week without the Pred.
Cinda, I understand your feelings about the money, and not having insurance. And I know it is a issue in your marriage, too. I DO understand how hard this is. But stopping now would not solve anything, and would in fact be a waste of the money and time you have spent up until now. You have to keep going until you get an answer. Most physicians offices are willing to work with you on setting up a payment plan - believe me, I am doing that now myself.
Sadly the human body isn't always the easiest thing to figure out. Most people have to go through several steps in diagnosing auto-immune diseases, because they aren't that well understood, and their symptoms can be like so many other things. Additionally, testing is inadequate for diagnosis. It's not anyone's fault, it's just the way it is.
You need to be a squeeky wheel right now. Don't give up. Fight for your life. When you are properly diagnosed and treated, the world will be much better. Just look at how much better you were this weekend, and how much more positive you felt. Even the poem you posted today was much more positive. Just keep the faith and keep on searching for the answers and believe. There are many success stories on this forum - I know you have read them. You can be one too!
Thanks Hillhoney. I am trying to be positive...just lost. I know it takes a long time to fiqure out this disease. I have read most. I am not much of a squeeky wheel, tend to stay alone and not very good at expressing my thoughts or emotions. (Need to work on that). Even when I take a list of symptoms in I go over them so fast that I don't know if dr can keep up. Yes I was better this weekend. I felt positive they would give me an answer. But now I
I had a DR in Louisville, Ky. just over the bridge that I loved. Maybe see if I can get into see him. Perhaps he can find and answer.
Yes the poem was positive. Reliving childhood. One of my favs.
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