View Full Version : Had Doctor appt. today......

10-10-2007, 06:17 PM
So, after having an onset of symptoms on saturday aside from the prexisting symptoms I have had for two months, I saw my internal medicine doctor today. I told her all of my symptoms and her first question was "does anyone in your family have lupus?" We don't know if it runs in our family or not, not to our knowledge. She did an EKG on me(because of heart/chest pain, and shortness of breath), and everything looked fine on that. Then she did what I always dread: a blood test. I hate getting blood tests done, they are painful for me. She said she wanted to test for lupus or any other connective tissue disease. I will get the results back on friday. And she has me scheduled to get a chest xray and an echocardiogram next week. My mom asked "isn't lupus hard to diagnose", and the only thing my doctor said was "i really hope she doesn't have it." <-------What was her meaning? Is lupus really bad to have? Is it worse than the symptoms I have been experiencing(because I guess I can handle the symptoms now, it's rough sometimes, but I can handle it.) Another thing my doctor said was if the blood work comes back positive, then we will do additional tests. What are the additional tests? There's no more blood tests, right? Also, what am I supposed to do with the tests come back negative??
Thanks for any advice and I will update you guys! :)

10-12-2007, 12:18 PM
I can't tell you what she meant when she said that she hoped you did not have lupus. Perhaps it was related to the fact that lUPUS is a chronic disease that has no cure; that symptoms come and go; that patients deal with relapse and remission; that your life will change with this disease.
The reason that she may want to do more tests in the future is because Lupus does change and, as I stated, symptoms come and go. ANA levels are not constant (they could be borderline on one test; positive three months later and negative after another year!). We all have to have blood tests regularly in order to monitor the activity of the disease. This is necessary in order to determine our treatment, to see if medications need to be modified or new ones added etc.
If all tests are negative, what action is taken will be up to you, your doctor and your symptoms. Unfortunately, with Lupus, there are too many things that cannot be precisely predicted :?
Peace and Blessings

10-12-2007, 09:44 PM
Thanks for the information as always, Saysusie! You have been a lot of help!
Well, I was supposed to get the results from my blood test today, but it turns out my doctor didn't have the results yet, so she should get them monday.
But I did get back results from a blood test I got about three weeks ago for a pre-op test(picked up medical records today.) It says that I have low lymphocytes, low neutrophils, and low WBCs. Also, I have borderline low RBCs, the lowest in the range is 4.20 and mine was 4.20. With these low WBCs, is that an indicator of a problem? Is that ever seen in lupus patients? This blood test was taken before I had that onset of symptoms(joint pain, fatigue, flu-feeling, headache.)
Also, as you mentioned, how often are lupus patients given blood tests? Like once a month? Bi-montly? Once every two months?

10-15-2007, 02:02 PM
:( I got the results back today, and she said they looked normal. :?
Argh, what am I supposed to do now? I have all this pain and, as usual, no answers. I am so sick of not knowing what is wrong.
Should I go to a rheumatologist anyways, even though my blood tests for lupus came back negative? Or am I just wasting my time going there, considering nothing will probably show up on the blood test he does? I know that you can still have lupus, but have negative tests, but those are slim chances. I don't know what to do, it's so depressing not getting answers and everything seems to come back fine. :cry:

10-16-2007, 01:42 PM
If your blood tests are normal, it may just mean that disease activity is low. I am considered to have "Mild Lupus". As such, many of my blood tests come back normal. However, I still suffer from many symptoms. However, I am able to manage my symptoms and deal with the pain without having to take a lot of prescription medication.
It just may be that you have "Mild Lupus" (if you have Lupus at all) and that you can do things to manage your symptoms without needing prescriptions for drugs (such as prednisone, plaquenil, methotrexate, imuran etc.).
Do not be anxious for positive lab results because they usually indicate disease activity and/or involvement of internal organs. Also, it is not rare to have Lupus with normal labs...that is quite common when the disease is in remission or when the disease is mild.
You should concentrate on keeping yourself in this state of normal lab tests. Continue to take the appropriate precautions, continue to make the necessary changes and continue to take care of yourself so that your tests never come back positive!

I wish you the very best :lol:
Peace and Blessings

10-16-2007, 02:05 PM
Thanks so much for the reply, saysusie!! :D
I know something is going on in my body. I have bladder inflammation and my urethra is very inflamed, and no one knows why. There is no bacteria or virus at all, and I have read non-bacterial causes of urethritis is an autoimmune disease/rheumatoid problem. And I went through lists of autoimmune problems, and the only one that really applies to inflammation in body tissue and organs is lupus. I also have this heart pain/shortness of breath, and I am getting that checked out on thursday. Plus, I have joint pain everywhere, mostly in my hands/wrists and shoulder and knees, and I feel like I have the flu on and off everyday with an awful headache. I have also had unexplained sore throats/swollen lymph nodes occasionally. I know something is going on, and something is causing all of this, and everything started around the same time, too. Plus, a blood test I got three weeks ago showed low WBCs, low lymphocytes, and low neutrophils, which isn't normal.
It's not that I want to have lupus, it's just that I am sick of having so much pain and no medicine is treating it. I just want a name to all of this and some treatment, instead of getting the runaround at doctors and having them tell me it's all in my head, which is really frustrating.
I just have no idea what else this could all be. At my urologist a month ago, the question of seeing a rheumatologist was brought up because of this inflammation, and he said let's see what the antibiotics do, and after a month, they have done nothing. And I will be seeing him on monday. Is there any other autoimmune disease that can cause all of these symptoms, primarily the tissue and organ inflammation? It's all so confusing and frustrating. :?

10-17-2007, 08:56 AM

Just read your posts and wanted to respond. I know how frustrating it is to feel so bad and know something is wrong and have doctors tell you they can't find anything. It's like you said, you don't want it to be Lupus but you do want an answer! I started feeling "off" last year. Fatigue, intermittent joint pain and muscle aches. It lasted about 3 weeks (didn't go to doc.) then I felt better. Well, fast forward 3 months and it came back. A little worse than before and I was getting numbness in arms, right leg and right foot. Decided to go to doc. to get blood work. Only thing they found was a positive ANA titer of 1:640. She sent me to a rheumy, took 2 months to get in and by then I was feeling good again. This was in June. Rheumy said there was no evidence of autoimmune disease as she couldn't SEE (ie, rash, swelling) anything wrong with me and only oddity in labs was positive ANA again. She said she suspects something is going on but until more symptoms/blood work evolve she doesn't know what to tell me. I know this is very typical. My sister has Lupus/RA/Sjogrens and 3 cousins on same side of family have Lupus too. So the odds are I have something along those lines as well. I wish you the best of luck and hope you get some answers and treatment that works for you.

Take care,

10-17-2007, 02:59 PM
Thanks, Keri!! I appreciate it! :)
I picked up a copy of the records of the lupus blood test, and everything was normal. :? In the records I also received a blood test I got about 2 months ago, which showed everything normal. But that's odd because about three weeks ago, a blood test I got showed low WBCs, low lymphocytes, and low neutrophils. How/why did it change? Is that possible? Does that mean that another blood test I get, it could be possible that something will come back postive? This is all so confusing. Tomorrow morning, I will be getting the chest xray and echocardiogram to see what this chest/heart pain and shortness of breath is. Hopefully they'll find the source of that pain tomorrow.
I just don't know what else it could be that I could have, neither does my doctor, her only thoughts are lupus and reiter's syndrome(which has since been crossed out.) Has anyone ever had everything negative when testing for lupus, but then they had some positives? Maybe I should get another blood test on my follow-up appointment.

10-17-2007, 04:22 PM

From what I've heard and read about Lupus blood testing is that it can and does change. The best thing you can do is keep a journal of symptoms especially if they are new and keep getting re-tested. Some people have symptoms for years before anything shows up in bloodwork. Just keep track of everything you're experiencing even if it seems trivial because it is the only way for the doctors to piece it all together. Also keep up with your medical records/lab results. I'm so sorry you're going through this at such a young age. I feel lucky that I didn't start feeling sick until I was 34. Everyone else in my family was much younger when they started getting sick.
It's great that we have all this information on internet and people to talk to. It helps to know that your not alone!
Let me know how your next appt. turns out.

Take care.

10-17-2007, 06:57 PM
Thank you so much, Keri! I didn't know that people have symptoms for years before anything shows up on the bloodwork! I hope that if it is an autoimmune problem, mine will show up very very soon.
And just last night, I typed up a journal on my computer starting when everything started and what a noticed, etc., and I am going to keep updating it as I notice anything then I will bring it to a rhematologist. Also, my mom has a folder with everything in it, test results, doctor's papers, etc.
Yeah, it's hard being my age and being sick, and it's even harder having no one give me answers. I haven't been to school for about two months, I went to school for about 3 days(which were terrible due to pain), and now my doctor and the school put me on a homebound schooling program until I get better, it's just hard, and I have no idea when I will be back in school because I have made no progress within the last two months because no one is giving me a complete diagnosis, so I don't have any treatment. But I figure that from now until the end of next week, I might get some answers because I have some tests and doctor appointments, so hopefully I will know what will be next soon.
I really am thinking of just asking my doctor to give me a presciption for a low dose of predisone just to see if that will help at all with the inflammation(and the pain from it.) I am desperate, this pain/sickness is getting old. :?
And I am so thankful I found this forum. There is a lot of very nice and caring people on here, and it helps talking to someone who understands. My family has been really supportive, but I just feel that they don't understand what I am going through, so it helps to have this support system here.
I will post some updates when I get them!
Thanks and stay healthy everyone!