Re: Newbie? Full of Questions!

[Guest guest]

Hi Sherry:

I'm sorry that you've found your way to this group because you are suspected of having Lupus, but it's a great group that can help you through all that those doctors & life can dish out. The way your doctor will probably diagnose (dx is shorthand for diagnosis, keep that in mind, it comes in handy!) your having lupus is through the other complaints & symptoms you have. There is a list of 11 diagnosis criteria that assist in your doctor giving you the lupus dx (see there it is in a sentence, it's a handy little thing, huh?) There are other lab tests that also come into play with the dx, such as sedimentation rate, as well as others, but ANA is usually the biggie. I am unsure of the ratios, but all I know is that once you have a positive ANA, that should be considered by the doctors, as you may not have one again for a long long time. You can get a plethora of information about lupus, the tests & such from the Lupus Foundation of America at their website www.lupus.org as well as through the "links" section of the Lupies Yahoo home page. The best information about the disease can be had at these two places. A member that had just passed away (which is why it may take some time for you to get other answers from the group, as everyone is still in mourning for her loss) had made a huge compilation of info concerning all thing lupus & can be found at www.itzarion.com/lupusgroup.html had made a great compilation of all a lupus patient will ever need to know & then some. I suggest you start by reading through her info links for starters.

Now about flare-ups: flare ups occur once in a while to those with lupus, as well as any other disease, but lupus flare ups are notorious for being horrible. You ask if the symptoms remain consistent & in my experience, they only constant is more pain on top of my chronic pain, as well as being very weak. Your symptoms can ebb & flow like the rivers, but when you are in a flare up, you'll know it because it seems that all of the usual stuff that makes your life miserable is amplified. Your achy joints will be worse, your fever may elevate (which is one of my least favorite flare up problems because it leads to the next thing), fatigue gets hold of you & won't leggo, you may have worse headaches that are like an 8.0 on the richter scale, & you may experience new symptoms or aches during a flare. The thing about lupus is that it's a gift that keeps on giving! One day you may have swollen & red hot joints in your hands & the next day, you're left dealing with a rotten headache. The thing is, with lupus, it's rare to find people that have the same exact symptoms. No two lupus patients are the same. We're unique! (JOY!) Although we may have similar symptoms, it's rare to find someone that's got the same bunch of symptoms as you do. So what I may experience during a flare up, will be very different from what you get. As with any illness, everyday, flare up or not, there will be good days & bad days. Usually there are more bad than good days during flare ups in my opinion.

About the face rash, which is called a malar rash & often referred to as the "butterfly" rash: only a small percentage of lupus patients get this. Contrary to popular belief, it is not a common occurrence in lupus patients & while the ones who do have it can have it all the time, or just some of the time, it's not a definite thing. I've dealt with many doctors & nurses (mind you they are like a million years old) who swear that in order to be dx'd (diagnosed) with lupus, one must present with the malar rash. I have met people who always have it, & I've met some who have the rash pop up when they are stressed, & then there are some like me who get the rash from exposure to sunlight & other light sources (huge fluorescent bulbs are the worst of the offenders for me.) I must wear 70SPF sunscreen when I go out in the sun, year round, & also when I go shopping in stores with bright lights, such as Target, Walgreen's, or BJ's. While it was believed (way back when the dinosaurs roamed) by those being taught in med & nursing schools up until the late 1960's that all lupus patients had to have the malar rash, it has been proven that only a small group (I believe it is like 20% at most) of those with lupus get the rash.

The problem with asking everyone how long it took them to get a dx of lupus is that almost all of us had different symptoms & lab results, not to mention some having better doctors than others, so while it took me almost 6 years to be diagnosed, it may have only took weeks after the onset of a symptom for someone else to be dx'd. Keep in mind that we're all different & had different symptoms that led our doctors to screen for lupus. So while it took me a small eternity to be diagnosed, it may take you just a few months after your first complaint.

Lab work also takes various times to get back, but all of the important blood work should be done & ready to review within 2 weeks of having it done. Don't get frazzled waiting for the results though. It's not worth the agony to sit & wait for the phone to ring & you should just go on with your life as best as you can.

The best way to spend any doctor visit is to go in with a list of questions you'd like them to answer. It's best to go in armed with all the questions you need answered than to sit there like a bump on a log, trying to portray yourself as "the good patient" & leaving the visit still wondering about what's going to happen next, or having to rely on the internet for answers, because as you've seen, everyone has different answers. The internet can be a wonderful tool, but their are snake among the meadows & you can be taken advantage of by people who are looking to bilk you out of your hard earned money, those who get your trust & then exploit it, & websites that are chock full of BAD advice. I'm telling you now, NEVER start a treatment or program of any sort without your doctor knowing about it. Remember that no matter how much people rave about something, THERE IS NO CURE FOR LUPUS! I'm not saying that there are people who want to honestly help you, but even on this group, people will suggest things that may be right for them & wind up being lethal for others. Internet support groups are a great place to start for venting, getting help & advice with day to day trials, but it is best to reach out to others "in the real world" such as through your doctors' offices & through your local chapter of the Lupus Foundation to get the best support. You will see that there are many support groups on the internet for almost every ailment, but be wary of those that want you to pay a fee to join & NEVER share too much personal info with people you don't know, such as your social security number or want a credit card number. As a precaution, I also do not give out the names of my treating physicians.

I am hoping that all that I have told you is not scaring you, but I'd hate to see anyone be taken advantage of in any way, shape, or form because you may be en route to a dx of a really rotten disease. Forewarned is forearmed! Be sure to ask for help with understanding things with your doctors if you have questions. They are paid to care for you & among that care is the fact that they must be able to answer questions about your condition & treatments, or lack thereof.

I hope that you are not dx'd with lupus Sherry, but if you are, you know that you have found help & support through this group. I'll keep my fingers crossed for you. Take care of yourself & remember to steer clear of stress. If you ever need someone, you can write to me personally or through the group.

Hugs & Stuff,

Kerry