stressful dr appointment

I will try and make this as breif as possible.  I have been having symptoms for almost 6 years (since the birth of my daughter).  Symptoms include: Horrible mouth ulcers (only get better w/pred), nose ulcers, fatigue, migraine w/aura, foot pain, joint pain (elbows, knees, esp lower back), finger swelling in am.  Some what of a sun rash on my cheeks when out in the sun, but not raised, psoriasis and blood in urine.

Anyhow I was diag w/ RA in March of 06.  Sed rate=44, anemic, RF=19.  That drs office was crazy-3 hour waits.  Fast fwd to 2008 new rheumy does not think its RA, no swelling etc. Labs normal but I was taking methotrexate prescribed by last dr.

Just went back in Tues, stopped metho, told me no way was this RA.  I asked about Lupus and Anklosing Spond.  Because of the lower back pain and mouth ulcers which I know are not usually part of RA.  He said no way-discussed labs that were positive.  He says "Well my wife's sed rate has been 50 for 7 years and nothings wrong with her." ???? He said that I dont even have enough syptoms to be in a clinical trial he is doing.  He said all these diseases are over diagnosed and pretty much said all these other dr's don't know what the @#%$ they are doing.

He then prescribed me Lyrica which I am reading has horrible side effects.  He was trying to tell me that stress causes psoriasis, well how come when I was on methotrexate I felt much better?!

He was telling me I need to deal with it and maybe see a pain dr coz its out of his scope.

Then the final thing he says is, "Maybe its Sjogrens Syndrome"???????

Anyway sent me for x rays of back and bloodwork.  I am so frustrated I don't want a disease but some thing is very wrong!!

I am hoping to prove him wrong.

I even started crying which I never do, made me feel so belittled and dumb.

Thanks so much in advance I have learned a lot on here you guys are awesome!!  Sorry so long!!

One way to find a rheumy that "listens more & dismisses less" is to use the chapter locater on lupus.org to find your local group. Then see what doctors are active with that group -- these are the ones who are at least knowledgeable about autoimmune diseases. You can also go to a few local meetings to get a feel for what people have to say about their doctors. Some drs want to do everything based on lab work --- but these diseases are a lot more than the numbers!!! It's well worth the effort to find a dr who treats symptoms not just labwork! Hang in there,

Organ involvement has NOTHING to do with diagnosing lupus. This dr needs to be shot -- too bad we don't know a 'cause for lupus or we could give it to him!!! The American College of Rheumatology is the "gold standard" for rheumatological illness, including lupus. Here is a link to their criteria for diagnosis. www.rheumatology.org/public/factsheets/diseases_and_conditions/lupus.asp?aud=pat

 SSJ - Please get another doctor!!!  So many on this forum can relate to your story or have come across some very unqualified and unfeeling (terrible combination) doctors, on the road to figuring all this out.  I stayed with a doctor for far too long who minimized my complaints and made me feel like a nutty whiner.  Time wasted.  You really do need a good rheumatologist.  Listen to your body and the intuition that is telling you something is not right.  You can learn a lot here, and find encouragement - especially for eventually finding a doctor who will listen and test and treat appropriately.  Hang in there and don't give up!

Lucy

SSJ

I don't know what too say that the other very intellegent members have not already said! I am really sad that there are doctors out there with that mentality. I want to back up with the others have said and urge you to find another rheumatologist.

There are so many reliable websites out there that explain lupus symptoms and such. I hope you will do some research on your own and see how wrong your current doctor is. It will only benefit you and your health.

Best of luck on your journal.

Melissa

You all are so awesome and made me feel 100 X better seriously!!! I really can't talk to anyone about this-my husband doesnt get into the medical stuff and I am just so glad to have you all, when I just checked and saw it the responses, it made me feel great! Thanks. I had read that you dont need organ involv for diagnosis, but he acted like he knows it all!!
I was never so upset by a dr appointment. And I even explained to him my frustration and that we are moving again next summer (military) and I didnt want to start all over. Thanks again! I have learned so much

Hi SJJ, I didn't get in on this yesterday but it sounds like my old rheumy and your new rheumy went to the same school. You need to call around and specifically ask does this rheumatologist deal with people with autoimmune disease? Not all of them do. Many only know about arthritis and bone and joint stuff. Unfortunately some dr's have a God complex. It's not nessesary that they have a great bedside manner but you need to be able to ask questions and get answers without being talked down to. Sadly depending on where you live it's very hard to get into an appt. They are all so busy.
Oh I had a doctor pretty much tell me that all other drs were idiots except him. I did what you did and came here completely overwhelmed and feeling lower than a snake. Everyone told me to run don't walk to a new rheumy and I did. Unfortunately 2 years later and 4 rheumies later I'm still looking for answers but at least I am getting better at dealing with the drs.
let us know hang in there. Oh if you don't have a script for your mouth sores you can buy malox over the counter and swish it around in your mouth. It does help.
praying things get better for you soon
hugs