Lupus Support Group

Hello my fellow Loopies. So I went to see a rheumatologist and he diagnosed me with RA and refused to take into account my other symptoms. The symptoms he is ignoring are the rash that appears after sunlight exposure, my photosensitivity, the sores on my head inside my mouth and in my nose (which causes nosebleeds), and my frequent hair-loss. He refuses to acknowledge my Lupus symptoms. I hate this. I thought I found a rheumy that would be thorough and would listen to me but he won't. He gave me plaquenil a few months ago which was helping but then decided to put me on Enbrel for the RA and then my lupus symptoms started flaring really bad. I need a doctor that will listen. I'm sure you know what I mean.

Unfortunately, I do. I'm sorry that you weren't taken seriously. Keep on him, hang in there.

ya, I think a lot of us Lupies have had to find new drs. I finally am content with dr #3. If you feel you are not getting the care that you need, you need to find a new dr. We are the customers. Take pictures of your rashes, mouth sores, swelling. Gather what you can, do research on the drs, and go in pro active.

Good luck

Lynnette has a good suggestion....take some pictures of your rashes and make an appointment with a new Rheumy and take these pictures in with you along with labs and tests.....I am so sorry that your doctor now won't listen to you.....that must be so frustrating....just keep on going...this is your life, your body...don't stop until you get some answers.

Eva

I think taking pics to show the doctor is good. It is evidence he can't ignore and I have lost count with the rheumys. I have seen three and on the 29th I will see number four. They all have a different opinion of how to treat Lupus and it can be very frustrating. So I have also got brain lesions and I was so frustrated with Neurology that I said forget it and made an appt with the Cleveland Clinic and the visit was awesome and I finally feel like I am getting somewhere. So I decided when I see the next rheumy on the 29th if she isn't any better I am going to rheumatology at Cleveland as well. I am tired of having to switch doctors and then keep repeating my extensive history each time. So if you aren't feeling good about your care don't waste time and see someone else.

April

Aw, I hate that you are paying someone who is treating you like that! It may be time to collect your chart and move on if that is a possibility. If not, I would make an appointment with your Rheumy to discuss his reasoning in detail and why he is not treating your symptoms seriously. If you still are not satisfied, say "thank you for your time", shake his hand and find a replacement. I always let my Dr.'s know that all my friends and family are eagerly awaiting his/her advice too (hint to Dr., the grapevine is powerful - especially with all the social networking)

Good Luck and hang in there.

I'm so sorry to hear of your difficulties with the rheumy!! I think it is a great idea to get a complete chart on yourself to take to a 2nd opinion appointment. I know most of us have gone through getting 2nd opinions, firing docs, changing docs! These diseases are hard to treat and it is so important we have a doc that will listen. I wish you all the best in your search for a new doctor. Please keep us updated and hang in there!

Amy

So what I realy want to know is there a rheumy out there that actually has a bed side manner? They all just seem to be robots. They just go through the charts poke you all over and ask if it hurts then ask you the same damn questions that everyone else has then reads your chart like they have never read it before. The they do more blood work tell you if you want the results sent to your primary to let the lab tech know so she can note it on the paper work. Same thing over and over and over. My thing is I drove almost 3 hours to hear this. Why not just see the same idiot and only drive 20 minutes?

My insurance only allows me to see certain rheumys so I am very limited. This sucks big time.

Many docs are egotistical pricks. Sorry!! My rheumy has no bedside manner either, but I have the most wonderful, compassionate family doctor. SHE is amazing.

I hate doctors like that! Unfortunately it does take a few Rheumys down the road to get the right one (I'm still searching too) You could try dealing with your family doctor first and or always can ask them for a second opinion from a different Rheumy. Close minded doctors just make me want to punch them in the face. I hope you find the right doctor soon, flares do suck very much. I have a binder with all my blood tests so if the doctor tries to tell me otherwise I show them the charts or I have pictures of rashes and other stuff to show them the symptoms right there and then because sometimes they go away or are hard to see. It's good when you can compare them with a I guess "slightly more normal picture" for lack of a better phrase. Like before rash/swelling and during rash/swelling sort of thing.