View Full Version : new member - not yet sure what is wrong...
12-27-2006, 05:14 PM
Hello. I found your message board while researching lupus. My name is Susan, I'm a 39 yr. mom of three in Cincy., OH. I'm awaiting my first visit to the rhumetoligist(spelling is not my best subject). My family doc has referred me since some blood work has come back "borderline" lupus....whatever that might mean. So I have lurked here today and read some old posts. The medical sites I've found are very informative-but reading how all of you live with the disease, or a loved ones disease, helps me keep my thoughts positive that I can live well with this disease if need be. My main question if anyone has time to respond would be - what does a visit to this type of specialist involve?? I'm not a big fan of Docs and being poked and prodded, so knowing what to expect might take a little of the nervousness away. Appreciate any insights you can share.
12-27-2006, 05:50 PM
Hi, Susan - welcome. I can certainly understand - I'm not a big fan of going to the doctor either. A rheumatologist is a specialist in arthritis and rheumatic diseases that affect the joints and muscles. They also treat auto-immune diseases like lupus and rheumatoid arthritis that affect the joints, muscles and bones. If lupus affects affects other organs like they kidneys or heart, a rheumatologist may be the doctor who refers you to other specialists. They are not primary care doctors, so you will continue see your regular doctor too.
Most rheumatologists will do a regular physical exam, listening to your heart and lungs, taking your blood pressure and temperature and so on. They will take a detailed medical history, asking about your current symptoms, and any past illnesses. The medical history part of the exam may ask about family history too. They will examine your joints, looking for any visible signs of arthritis like redness, swelling, or stiffness. They may do x-rays in the office, or send you somewhere else for x-rays or other specialized tests. They will probably do a urinalysis and draw tons of blood for specialized blood tests. Depending on your particular symptoms and history, there may be other tests too. You will probably have to come back for a second visit because a lot of the lab tests take time - so it may be a week or two after your visit before you learn the results. And don't be too discouraged if your doctors aren't able to make a definite diagnosis right away - lupus is a very complex disease which can take years to fully develop. So unless you have very clear cut symptoms and lab results, your doctors may not have enough information to make a definite diagnosis. There is no one specific test for lupus, so your doctors have to put together your symmptoms and your lab tests to form a pattern. Sometimes it takes time for the pattern to develop. Hope this helps answer your question.
12-27-2006, 08:52 PM
Mary - Thanks for the breakdown. Anything less invasive than a gyn exam will be okay. I had some additional blood drawn at my pcp in follow up to the "borderline" lupus results (I'm figuring the nurse meant a weakly positive ANA, but she didn't want to get technical-they act like you're an idiot) so perhaps some of the blood work will be completed. I figure one way or the other doctors will own me for a few months... I'm already monitored for highblood pressure that isn't responding to meds and was dx'd with underactive thyroid about 9mos. ago and they are still working with my doses. I turn 40 in February-I feel like I'm falling apart!! The joint pain and fatigue I thought were just part of getting older and perhaps from the underactive thyroid... wrists, elbows, shoulders, hips, knees and ankles... feel like I've been hit by truck I'm so tired some days... The pain/fatigue come and go with no correlation to my work load. I was told during a genetic counseling session (Huntingtons in family) that the pain I was describing and the amount of motrin I take should be reported to pcp - she immediately referred and started this blood work... and here I am. I'm a little freaked out about the rashes and sun sensitivity - I have had a red toned "butterfly" on my face for years and have never been a sun bather due to rashes and other skin/sun issues. I just thought its how God made me - stay out of the sun and use a good foundation on face and all is well. Guess there's maybe more to the story... oh well, this is really long... thanks for taking the time to read and respond.
12-27-2006, 09:46 PM
Hopefully you will get some good input from the rheumatologist. A lot of autoimmune illnesses can cause a positive ANA, including Hashimoto's thyroiditis - so it doesn't necessarily mean lupus. The joint pain and flattened by a Mack truck feelings are very familiar to a lot of us - they are common with lupus but happen in a lot of other diseases too. Don't be surprised if the rheumatologist wants to repeat blood tests you've already had done - a lot of them have a particular lab they trust and don't want to rely on results from a different lab. I hope you don't have to wait too long for your appointment. Are you going to a doctor in Cincinnati or did your doctors refer you to the Cleveland Clinic? I'm in Cincinnati a lot on business but I never see much of anything except the Westin, the federal building and the University, so I've no idea what the medical care is like there.
And Susan, remember to take your meds religiously once they've prescribed them to you. I know you'll find in your reading that there tons of side effects to the meds you are required to take, but currently there is no choice for us. Hopefully your symtoms were caught early enough that your Lupus didn't get a chance to be so damaging.
12-28-2006, 06:47 AM
Mary - Cincy is a strange town.... but, no, I was referred locally to a Dr. Greenblatt. My step mom is nurse and has checked into him and found he is well respected and that actually I'm lucky he's even accepting new patients right now. I see him Jan. 10th. Insurance companies must love the idea of having blood work repeated - I hate to hear that resources are being wasted. Hopefully its the Hasimoto's(spelling again...). My mother had Graves and for a long time I was almost over active - guess that changed somewhere over the last 4-5 years... I guess I'll deal with drug issues when I find out what they want me to take - not a big fan of side effects. Refused blood pressure meds for 7 years since the drugs were so bad - luckily better ones are available now. Well, off to my job.
01-10-2007, 02:34 PM
Just an update since I saw the Doc. this morning... of course, so far, he won't rule anything out until more blood work is complete (apparently my pcp didn't run the secondary round of blood work like the nurse had informed me... :? ) so 2 weeks for those results. At least there won't be a problem with re-doing tests since they weren't done to begin with... But Dr. Greenblatt did indicate either way the fibromyalsia is likely at work and regardless I could begin some basic sleep improvement techniques(ie clean the room so its more about sleep, less about STRESS) and try to be better about sleeping on a regular pattern. Not too painful to give a try. Also, he told me my hot tub might be my best friend since hydro therapy within reason could very well be part of my program. Either way, at least no one tried to tell me it was "all in my head"... Hope everyone is well as can be.
01-10-2007, 03:07 PM
Hi, Susan - glad this doctor seems to be helpful. Fibromyalgia can cause a lot of the same symptoms at lupus, especially the fatigue and muscle and jiont aches. I hope the improved sleep helps you start feeling better.