I was recently diagnosed with Lupus back in October of 2007 (about six months ago). When several of my symptoms matched and I had a positive ANA on my blood tests, my primary care physician at the time referred me to a rheumatologist. The rheum. diagnosed me with Lupus and Sjogren's, both fairly mild, put me on plaquenil, and shoved me back out the door.
Since then, I have been having a very difficult time distinguishing when I need to see my rheumatologist. I have had lots of wacky symptoms randomly pop up over the past few months. I am still getting used to having Lupus. As most of you know, Lupus can do some strange things to the body and it tends to effect everyone differently.
I am having a hard time telling if some of the symptoms I am having are Lupus related- chest pains, neck pains, face tingling, etc. I actually went to the ER tonight for it, and after a bunch of tests they sent me back home and told me to see my rheumatologist for further testing. No, I wasn't having a stroke and no, not a heart attack. The doctor at the ER told me it might be related to Lupus, but I'd need to talk to my rheumatologist.
So my question is- when do you guys see your regular doctor? And when do you see the rheum? How do you know what is what? How do you know if some of these bizarre things aren't Lupus related?
I have made a friends with a girl in my area who has Lupus and she sees her rheum. for everything under the sun- it's like he is her primary care physician. But I guess I don't feel comfortable doing that with my rheumatologist.
I see my rheumi 2 times a month right now so he does tend to take care of most of my medical problems. I have an internist that I will go see if anything comes up between my rheumi visits. My rule of thumb is to go to my primary for everything and then let him tell me if this is something that should be handled strictly by the rheumi. My primary usually takes care of most things and I also make sure to get copies of everything to take to my rheumi appts and visa versa...It is really important to make sure your rheumi sends everything to your primary dr too so he is in the loop and can help you between your spec appts. and know what is going on regarding your status. I am still very unstable and having to have monthly IV cytoxan treatments so my case is a bit different and is more monitored than most. Usually if you are stable you will see the rheumi every 3-6 months unless you have a flare and need to see them sooner.
I understand your confusion. I had the same problem, and was being shuffled back and forth between my pcp and the different specialists and finally got peeved and let them know. That is why it is very important when you choose your primary care dr you make sure they are very familiar with Lupus and the many faces it has and how it is treated so you can see him for your lupus related problems as well as others. They need to know how your meds are effected by antibiotics and if you need to increase some of them when you are on them, for instance when I am on antibiotics, I have to increase my prednisone too.
I hope this helps you...your very best bet is to make an appt with your pcp and talk to him at length about this so you are both on the same page.
Erin
Dallas TX
PS...the ER is usually a waste of time and money. I have never left there feeling anything but frustrated and usually even ticked off!
I know. The doctor at the ER just looked at me quizzically when I asked what could be causing the tingling and he said, "That's just Lupus. It's hard to say."
Thaaanks.
Anyway, thanks for your response. My PCP is much easier to get into than my rheumie, plus her mother had Lupus. I feel very good with what she tells me and that she's a little more knowledgeable about the disease than most doctors and internists would be.
I just always get so confused. I'm still so new to this disease and the weird things it's doing to my body! Every week it seems like there's something newer and stranger happening...
Unfortunately that is how lupus is, just when you think you know what it will do, it will do something different. I am just hoping to get stable one day soon. I have pretty much given completely up on remission.
Neurological problems are pretty common, my lupus actually started that way with Optic Neuritis and my legs and arms going numb and so weak I could barely use them. You really just never know how your body will react and the meds have their own list of side effects so it is a rollercoaster ride for sure.
Hope you get to feeling better and glad to hear you have a good pcp. That really helps alot.
Over the 6 years I've had lupus I can't tell you all the insanely strange/painful/uncomfortable and baffling symptoms I've experienced. I find that most of them pass, like constelations, there are always a bunch of them going on and they come back over and over...but they disappear over and over too.
I see the rheumy for everything first...lupus is surprisingly misunderstood by many in the medical community and lupus/fibro are such complex and systemic things it's important to see them first in my opinion. They are the best to tell you if what you are experiencing is not lupus related and needs to be treated otherwise...because lupus causes so many symptoms it's easy to write everything off to it thereby easily missing some other condition that needs treatment (I have missed a few viruses over the years).
6 years later I am not all that comfy with my doctor...his bedside manner leaves a lot to be desired but he has never made a mistake. I have a wonderful group of GPs I see after I see him to get the compassionate care I often require after...
Here is where hope comes in...my pcp/gp has worked hard with me on my general health (which a rheumy doesn't have time for) and though v little has changed with my lupus (I don't think I will ever have a remission) my body is stronger and healthier in general and more able to tolerate the ravages of lupus and fibromyalgia...get exercise, eat right, find ways to reduce stress, take your vitamins, see your friends and family, ask for help and you will find this nightmare a lot more tolerable.
This is just my experience...you have to do what feels right to you...best of luck, you are not alone.
