I really need some help with trying to talk to my doctor and making her understand what is going on..hopefully without me crying the entire time. I am 36 years old and was finally dx with RA in sept. after 3 years of being told i am just over weight. My PCP is great and tried everything to figure out what was going on and we thought we finally figured out it was carpal tunnel syndrome. While preparing for the surgery to both hands I hand to go and do the nerve testing. The doctor said it wasn't CTS but looked like RA and to go get a blood test.

Now one thing i fogot to mention is that i go to a VA hospital so bedside manner not always there. For the first year it felt like walking on balloons because the balls of my feet would swell at night so i walked on my heels. told to get bigger shoes and lose weight. Tried to pick up my 10 pound doxie and had to have my boyfriend take him before i dropped him because my wrists went out. Had xrays done told it was a sprain been in a brace ever since to do any lifting or driving. Lost my voice after that and it still has not come back, ENT did the endoscopy of vocal cords got told my chubby little body isn't helping and i have reflux been taking omperazole no change and still no voice 3 years later.

In Oct. 2007 loss the ability to bend the fingers in my left hand. Told this was tendonitis and given muscle relaxers, was ok with this because i am right handed untill October of 2008 i started losing the ability to bend my fingers in my right hand, i had shooting pains going up my arm to my neck and couldn't wear shoes due to the edema in my feet. My PCP kept me moving with muscle relaxers, pain pills, 40mg prednisone and Lasix till i could get into rheumatolgy. She could not understand why it was taking 3 months to see them when my SED rate was 50 and all other test results were overly high.

Finally got in at end of November and only change was to lower pred to 5mg and a different anti inflamatory, put on plaquenill and told it would take 6 weeks to see results. Got headaches from the plaquenill, and the Etodolac made me sleepy, called the RA doctor she said that was impossible these don't do that and it was withdraw symptoms from the pain killers. Been on the etodolac before and know it makes me sleepy but she won't listen to me. She has never ordered any xrays or anything else to see what is going on with my hands since the diagnosis says she doesn't want to do xrays till a year out. In the mean time i get put on probation at work because i can't file since my fingers won't bend  and i can't open the fireproof filing cabinets, they are numb so i have no feelings in the fingertips and have gloves on in the afternoon because of them being cold. I can't wear  business dress items like pantyhose and high heels and have gone to a more easier way of getting dressed without the help of my 13 yr old son (it is very hard on me having him hook my bras in the morning or putting on socks and shoes) and my boss keeps saying to take the short term disability or FMLA so i can get this under control and see the doctor whenever i need to. I can't get him to understand there is no cure for this.

December 30th i went back and show her the nodules that have form on the top of my knuckles she told me that the nodules are not because of the disease but due to trauma to the hands. She told me that the plaquenill could take up to six months before i will see results, gave me sucralfate and added methotrexate and upped the prednisone to 10mg, looked at the blood results from novmember and told me the disease is not active. There is no damage to the joints (looking at xrays from 2 years back) that I don't qualify for disability because my hands bend at the knuckles before the fingers and I need to go to work with the mindset of keeping my job. And told me the my feet swelling is because of the weight gain and that the prednisone causes a chewing urge so i need to chew on celery and carrots when i have the urge to chew (i have not had this urge and don't have enought time to eat when i am at work let alone remember to use the bathroom some days) I was so frustrated that all i could do is cry which makes what little bit of a voice i have go to a squeak.

When i got home and told all this to my boyfriend he was just amazed that she said the disease is not active This is the first time he has been home since i was diagnoised because he travels for work. He is finally seeing what is happening with me, how i use the waves in the waterbed to get myself up in the morning and all the pills i am taking and doesn't understand how she can say it is not active. I don't know what to do when i go back on the 29th and i can't find a RA doctor in town that will see me because i have no insurance and have to pay cash.

I know this is allot but does anyone out there have any advice that can help me when i go to talk to her? She says to only read information from the American College of Rhuematology website, but that site does not appear to be user friendly. Please if there is anything i should know or do i need all the help i can get.  Joie