View Full Version : New here!
01-06-2010, 06:51 PM
Hey everyone I just wanted to introduce myself and tell you my story...Ive been dealing with a lot of health problems for the last 2 yrs and the Dr's are just beginning to see whats really going on in this crazy body of mine.When I first started have symptoms my doc sent me to the neuro and was sure I had MS.Well after lots of tests MS is ruled out as was pretty much everything else.After switching doc's and compiling all my symptoms the new doc is 75 percent sure that lupus is the answer.Ive tried typing lupus symptoms into google and have found only limited imformation.Im frustrated and scared and have no idea what to expect or what the Dr is looking for in these tests they're doing.If anyone could enlighten me that would be great.At this point Im hoping the dr's wrong but if not Im glad I found this place.
I'm Rob, and I was diagnosed with Systemic Lupus in 2004. Welcome to our group. The best place for you to start here on the site, would be the post titled "General Answers to Your Lupus Questions". It can be found just a few posts up the page from yours in the "sticky" area. The top of each page here has these areas, and they contain a wealth of information in an easy to understand format (not too much techno-babble). The info you will find comes from reliable sources such as The Lupus Foundation of America, and is quite accurate.
This all must be terribly overwelming for you, I know it was for me before I got my diagnosis. And it was scary. As far as what to expect, a Rheumotologist is the specialist who makes a Lupus diagnosis. There is no single test to rule the disease in, or out. There is a diagnostic criteria that they use to evaluate a patient. The Criteria is also in the sticky info area and will give you a good idea of what to expect. It can be a notoriously difficult condition to diagnose, and can take an awfully long time for some. They key is to Work with your Dr's and specialists (sometimes easier said than done) and get an answer as soon as possible. The sooner you have an answer, the sooner you can start the appropriate treatment and keep things under control.
There is no cure fo Lupus-yet. But it can be effectively managed in most people with proper meds and lifestyle changes. No two people will ever have the exact same symptoms. The ways in which Lupus manifests itself in people is unique to each person. That being said, there are some fairly common symptoms most people experience at one point or another. Joint pain, getting sick or having a flare up of symptoms after sun exposure, a Malar butterfly shaped rash on the face, extreme fatigue, and mouth sores are some of the more common ones. People with Lupus can also have neurological manifestations in the form of Cognitive Dysfunction, or as we call it-"brain fog". It's a problem that often affects short term memory, grammar, speech, and problem solving skills. Often I find myself drawing a blank in the middle of a conversation, or I suddenly find I can no longer spell even simple words. It comes and goes for me in cycles every few days.
One of the most important things to do, is what you are doing now-research. An educated and informed patient can be their own advocate. Also, you should think about starting a journal if you haven't already documenting all the various symptoms you have, their frequency, intensity, and use that to help your Rheumo get a handle on what you are experiencing.
I've only covered the most basic issues. Please feel free to post any questions you have. We have a wealth of collective experience here, and our members are always ready to help a newly diagnosed, or pre-diagnosis person. Just know, that if you do indeed have Lupus, it is not an end by any means. We have people here who haved lived, and thrived despite the disease for 10, 20, 30 years and beyond. So, please make yourself at home, and once again, welcome!
01-06-2010, 07:38 PM
welcome to our group. You are certainly entitled to this fear and frustration...i know how frightening this diagnostic process is. The members here helped me educate myself and eventually learn how to live with lupus. Lean on us, and we will help whenever you ask. You have found a great resource here at WHL.
01-06-2010, 08:10 PM
Welcome to the group! I hope you find this site as helpful as I have! Take care and feel better!
01-06-2010, 08:15 PM
I can't add anything additional to what Rob and mountaindreamer posted, but wanted to welcome you to WHL.
01-06-2010, 11:14 PM
Hello and welcome to this site, you'll find plenty of information here.
My name is Drema, I've had Lupus for almost 20 yrs according to my doc. It took 6 yrs of treatment for illnesses A to Z to finally get a diagnosis and that came from a doctor I had never seen before. Sometimes it takes a new Doctor to get a fresh take on all the symptoms/issues that come with SLE. I was always typing my symptoms into Google and more often than not it would pull Lupus into the search. I would say, LUPUS??? no way...and move on. I was semi shocked to learn that it was indded lupus and couldn't wait to call my old doc to rub it in.
01-07-2010, 07:57 AM
Hi Jesse and welcome to the group.
01-07-2010, 10:24 AM
Welcome to our family where we have all been where you are. Lupus is such a difficult disease to understand because it is so unpredictable and is never the same in any two persons. However, this forum is filled with people who live with this disease (from serious symptoms to almost in remission). Some of us (like myself) have lived with Lupus for over 30 years and many members here are newly diagnosed or waiting for a diagnosis (like you). Whatever stage we are in, you will find that there is someone here who can answer your questions, who understands what you are going through, and who can offer advice and information.
As Rob mentioned, you are doing one of the most important things that you can do to help yourself: learn as much as you can about Lupus. We are here to help you do that.
Do read the stickies in each forum, read some of the member's posts and breeze through the site. You will find that some of your questions will be answered. If you have any other questions, please do not hesitate to present them to us and I promise that someone will answer you and will always be here to help you.
Again....welcome to our family!
Peace and Blessings
01-07-2010, 07:02 PM
Just to welcome you to the site and let you know....you have found a great place for answers and understanding.Lots of love Amanda.xxxxxx