View Full Version : Okay, now I don't have Lupus so what's next

12-03-2010, 06:15 PM
I just visited a second rheum doc and she pretty much said my labs reflect no sign of Lupus. However, she wants to run different tests because so many other symptoms are present. She's back to the fibro diagnosis. She also wants me to see a blood doctor due to the pulminary embolisms (apparently they don't just happen out of the blue) and the lung doctor. She said that while I don't reflect Lupus, I could be masking other diseases like cancer (which she emphasized a few times) as well as fibro.

She gave me a lot of good information and new paths to follow but I just feel so lost. The ever increasing illnesses I have are very real and have been seen by doctors, not just me. I still can't breathe and my INR (thickness of blood) won't stabilize. It seems like I'm still in that dark room looking for the lightswitch.

Guys, I'm totally depressed. I know what fibro feels like and this ain't it. The fatigue is so awful. It's all the things we know equals Lupus or an autoimmune disease. Or maybe I've just looked into it so much that I've talked myself into it. And this doctor wants me off the prednisone pronto. My pulminary doctor says use what allows me to breathe. Help - suggestions please?

Linda From Australia
12-03-2010, 06:52 PM
What sort of good information did your doctor give you? Have they been helpful for you?

12-03-2010, 07:33 PM
I know what you mean. I was in the dark for SO LONG about my health. Then one day someone I didn't know grabbed me by the arm and said, HONEY YOU HAVE LUPUS! She gave me her doctor's name and he diagnosed me even with a borderline positive diagnosis. I had been to Mayo Clinic where they suspected it, but he confirmed it. I know how you feel... in the dark and though it isn't the most important thing, just knowing what is wrong with you will make you feel so much better. I pray that you find out what is going on and it gives you peace. You deserve that much. I have Fibro and I know it does suck, but like you said..you know what it feels like and that aint it! ((((hugs))))

12-03-2010, 09:20 PM
Did your doctor consider the possibility that your current labs do not reflect disease activity because of your medication? The purpose of the medication (such as Prednisone) is to reduce/eliminate disease activity and the way that you know your meds are doing this is by lab tests coming back within normal range. That is why you are taking the medication!
Also, is she losing her mind wanting you to stop the Prednisone immediately. Abruptly stopping this medication can cause serious damage and SHOULD NOT be done. Prednisone must be tapered slowly...very slowly. For many, tapering the Prednisone caused some of the symptoms to return. So they have had to remain on a maintenance dosage in order to keep their symptoms manageable.
You are suffering from symptoms that could very well be Lupus (or another auto-immune disorder). I am glad that your doctor is, at least, willing to run tests to determine exactly what is going on. However, do not let her totally dismiss the possibility of an auto-immune issue just because your labs are in the normal range.
I wish you the very best and please keep us posted about the results of the other tests.

Peace and Blessings

Linda From Australia
12-03-2010, 09:27 PM
Saysusie is right about your current lab results being normal because of medication.
I have asthma, and at times when I have a cold or a cough, my doctor listens to my chest and says that I am not wheezy, but she never says that I dont have asthma. She is more likely to say that my asthma is not playing up or that my asthma is OK at the moment. So maybe doctors should actually say that 'your Lupus is under control at the moment, instead of 'you don't have Lupus.'

12-03-2010, 10:22 PM
It seems that we were all just discussing this on another thread. Why can't these docs accept that there was something wrong when the labs showed it and that maybe the meds are doing their jobs when the next lab looks normal?
Linda is right - I had two girls with asthma. The docs told me that they could control the asthma, but never cure it. Once they had the diagnosis, that was it - they have asthma. If it works for asthma, why can't it work for AI diseases?
Keep looking for answers, Serand - there has to be one.

12-04-2010, 12:35 AM
Susie is correct! You cannot just stop the steroids. You have to taper. It seems like every new person comes in with more doctor horror stories. It makes me almost ill! It will be OK Serand. We are here for you

12-04-2010, 02:45 PM
Thank you all so much! I have to admit, I'm really fighting depression today with all the conflicting information. And you're right, why on Earth didn't I think about the meds surpressing the illness? Honestly, I don't even consider leaving the thinking to the doctors anymore. It's an insane buffet of information and you have no idea what answers you're going to get. I will definitely take the steriods down slowly. Thank you for the reminder on that one. I honestly don't want to have Lupus, none of us do. But we DO want answers and we want something that will help. I will continue with the blood tests this second doctor suggested and see what they say. I'm also going to stay on the Plaquenil because I feel much better on it than off of it.

Thank you again! You guys can't imagine how much your support means. My parents are such a blessing but they aren't walking in these shoes. I need you guys because you truly understand that each day, each hour even, is so different.

12-04-2010, 03:43 PM
We love ya serand

12-05-2010, 04:36 AM
Serand everyone has been here for you. their advice is sound. Here's my bit, my rheumy says that my lab results are so squirrelly that she has a lot of trouble with them. One visit they are totally Lupus and the next they are not. You can't just go by one testing is what I'm trying to say. and of course tapper off the pred.

Hugs and good thoughts,

12-07-2010, 01:20 AM
I hope you're feeling a bit better. sometimes, at least for me, a couple of days can make all the difference, especially when I come here and get the great advice I know I'll always get. The one constant about Lupus is that it isn't constant, and that no two doctors, no two tests, will agree 100% with each other. You have to step back and look at the big picture when trying to figure out this disease. If you were diagnosed once, there must have been a reason. To just undiagnose you, in my opinion, is reckless. To just stop medications that were prescribed for a reason is also reckless. Keep that dialouge going with your Rhuemy and push for more answers, maybe more tests, before making radical changes.

Great big hugs, gentle ones though, going out to you.

12-07-2010, 09:13 AM
hi serand,

i hope you are feeling better today. you have so many friends here, and i hope we can help bring some peace to your worries. You have received some great advice here, and i hope that we help you find the strength to stand up for yourself, and to be your "best advocate".

There are many times that my rheumy will send me to another type of specialists (depending on the symptoms that i report to her), but never has she thought about changing my diagnosis. She has added AI diseases to the initial lupus diagnosis, but once the diagnosis was made, that was it, and we have moved on from there....you deserve the same. My rheumy will send me to other drs. in order to rule out any other problems not related to lupus, but is never surprised when the final report comes back negative. So many times we have written symptoms off as "must be my lupus"....i have learned to hate those words, but at the same time, at least other problems are ruled out. And there have been times when my symptoms were related to other issues (ex. heart , bladder, and gallbladder), but even those specialists agree that lupus could still be the initial culprit.

Our bodies are attacking themselves ( the simple ANA tests determine that). This attack can be isolated to one particular part of our body, or it can be everywhere, attacking different areas at different times. My attacks come and go, vary in degree, vary in duration, and sometimes attack everything, and sometimes only one particular joint or muscle or organ.....Just because i happen to go into my dr. when the disease is under control and my labs don't show any current activity, does not mean that my dr. should consider changing her initial diagnosis...the diagnosis process was very thorough and timely....it was made using a combination of scientific research and personal health history reports. You deserve the same....

It is your life, and it is your team that should be working together to control your disease. You are the captain, and you determine who is on your team. Do what is right for you, and don't worry about what others think. If you really like your dr. (other than this last visit), you might want to try talking with her about your concerns. If she is open to conversation, and compassionate to your concerns, then you probably have a good dr. However, if she shrugs you off, then you might want to look for another rheumy. I walked out on the top rheumy in Atlanta and never looked back....he was a jerk, had no compassion, and i knew that i was just a number to him. I searched and found my current dr....we have been working together for 15 years now, and i trust her. I recently fired my nephrologist because he decided to call my rheumy and reduce my mtx without discussion. when i asked him to talk to me about this decision, he just changed his mind and told me to go back to my initial dosage. He would not discuss it with me. I have moved on, have a new nephrologist and am moving on. I told my rheumy of my decision to change nephrologists, and she nodded in agreement, and let me make my own decision. You deserve the same....

we will be here to help you in any way....no matter what your diagnosis is....we are family, and are going nowhere.