This is a medical question. Would it make sense to make appointments between appointments to see your doctor,when you have Lupus?

Can you call the office and discuss your concerns with the nurse? What do you mean by want to know ‘what to do”? Do you means the basics like diet, meds, exercise, etc? Did not your doctor discuss how to live with Lupus with you?

Perhaps the nurse can hook you up with a patient Lupus support group, either online, or even better, meetings with real people, where you can share your concerns and anxieties, which must be (understandably) considerable.

Here’s one

Here’s another

And one more

My doctor acts as if she doesn’t know what to do on either end of the spectrum. and maybe because this is not typical in Louisiana. There’s no local chapter here,and if anyone has this, it is not widely known or looked into. So that’s why i said I did not know what to do. And yes I want to know as far as diet,exercise,meds,etc.

Have you asked your doctor for a referral to a specialist?

She let me know months ago that I was to see a specialist,but then when I went to her again in May sh told me that I needed more blood test,b e c a u s e the specialist that I was to see called for three more test,that she didn’t do herself. So now I am scheduled in July for those test,and to see a for gastroenterologist, for a colonoscopy,... (?) I still wonder how long now will this take,since this seems like another setback.

Here’s a support group in Baton Rouge.

http://www.americantowns.com/la/batonrouge/organization/louisiana-lupus-foundation

And a good one in New Orleans

Are you under the care of a Rheumatologist?

Do you have a family member, partner or good friend who can act as an advocate for you and hustle things along?

No, I am not under any care but my PCP right now. I am on medicaid,and it’s a certain kind,which really isn’t insurance,but something that gets me in,and don’t have to pay,but I wonder if this is why thee is so much lag in me getting to see specialist. I will ask questions to her again,and as always don’t give up until I get an answer. I live in the New Orleans area, Westbank to be exact,and I hope that I get to see someone soon.

Thanks for the link,..I will go there now and check it out!!

The support group sounds like a great idea. If your doctor “doesn’t know what to do,” she should be making it her job to learn everything there is to know about lupus in order to treat you properly. If she’s not doing that, you probably need a new doctor. And in the meantime, you need to learn everything there is to know about it, so that you can assess the care you’re getting.

Good luck!

I don’t know if this is different from the others.
http://louisianalupusfoundation.org/

I was diagnosed with Rheumatoid Auto-Immune Disease two years ago, and like many auto-immune patients, my symptoms do not fit neatly into one diagnostic description. Some of my symptoms are characteristic of lupus, and others of psoriatic arthritis, and some I haven’t found what condition they suggest.

This is why these conditions baffle most internists and general practitioners, and why it is best to be under the care of a Rheumatologist, who will run the necessary diagnostic tests and recommend a treatment plan and monitor you. There are many support groups, as noted. I also follow many support groups and organizations for Auto-immune conditions on social networks, as well.

Since you are in a city with a good medical school, you are in a good position to get state-of-the art care, as there are many new developments in the field of rheumatology. I hope you’re feeling better soon!