I just came across this forum. I guess I am stressed about seeing the doc tomarrow. We are a military family and live in S. korea right now. I have been having a hard time with the new doctors. My medical records were lost when we moved here so its like starting over. In the past the doctors tell me that I have a undifferentiated systemic autoimmune disease. I think its RA but most the time they don't listen. All of my test come back normal but my body and symtoms say something is wrong. Pain and stiffness in hands, elbows, knees, and feet. Tired, miserable feeling most days. Ridges and white spots in my fingernails. The pain is worse in the morning and gets a little better as the day goes on. I did have a Rheumatologist put me on Enbrel about 2 yrs ago it was a miracle at the time. I cant get these doctors to give it to me they just keep doing pred. and pain pills. The pred. makes me grumpy and the day after i finish the cycle I'm hurting again. I'm frustrated and sad I guess. my family gets tired of hearing me and I don't complain much. So I'm telling you guys so I don't have to tell them. Thanks for listening and if there is any advice it is always welcome.Welcome!
Yours is such a sad, common story, Spembie. Doctors are so ignorant. Are you seeing a rheumatologist? Do you even have access to one there? Your Rheumatoid Factor is important, but it hardly determines whether or not you have RA. Any competent doctor knows that. Many of us are sero-negative. I'm sero-negative. A strict regimen of Arava, Methotrexate, Celebrex & prednisone has given me back my life.
It is very important that your doctors do more. You need a bone scan. You need x-rays. You need a good diagnosis and treatment. Prednisone is NOT a treatment for RA. I'm sure you know all of this, but how do you get help?
If you can't get a competent doctor (Enbrel is expensive - they don't WANT to treat you), start a letter-writing campaign. Don't let them destroy your joints. There is a lot of sympathy for the plight of the military right now - let us know that you are not getting the care you need. I'd be happy to call my congress people right now. In fact, I'll do it today. Write to newspapers. "Losing" your records is a disgrace. And a convenient excuse.
Let us know how we can help. And we're always here when you need to vent.
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