View Full Version : Playing the waiting game..........
08-01-2009, 07:12 AM
Hi, I am new here and in the process of waiting to hear if I have Lupus. I will give you my symptomatic history and would appreciate any input as I am filled with anxiety awaiting to here from my doctor.
10 years ago had a high fever with chills "hit me" from out of no where, lasted overnight, awoke the next day fever free but with a raised red rash across my face. Rash was not itchy, lasted 2 days, disappeared with no scars. I did not go to the doctor for this, actually thought it was no big deal. Since then, I went into early menopause, have had frequent low white blood cell counts, aching and stiff joints, loss of hair, hot flashes and intolerance to heat (which is so upsetting since I am a beach lover). Well, I finally got fed up feeling crummy and visited my OB/GYN and he ran the blood work. I came up positive for RA, and Direct Positive ANA, low white blood cell count and vitamin D deficiency. We talked about Lupus because I was aware of the symptoms and he referred me to a Rheumatologist. The Rhem. prescribed hydroxychloroquine, naprelan, and vitamin D. He also ordered more blood work including the Dna-strand test(?). Now I do have a follow up appt. with him next month. I haven't heard from him regarding my blood work results. I called his office and they said he will call if there is a problem. So, am I suppose to assume that all the blood work came back negative and I don't have Lupus? Or maybe he feels it is not necessary to call me now since he already has me on the meds anyway? I just feel so alone and in limbo. I don't know why I need this answer so bad. I am already responding well to the hydrxy. med he gave me. My joints are so much better and the swelling has gone done a lot. I wish I could just relax and enjoy feeling better. I feel a little OCD about this. I don't want to keep calling the doctors office and have them think I am crazy! Anyone else have these issues?
I'm Rob, and I was diagnosed with Systemic Lupus nearly six years ago. From what you explained as far as symptoms, it sure sounds like Lupus to me. You have basically all the major symptoms I had (except for the female specific stuff!), and still sometimes have.
To leave you hanging, wondering, is wrong. I would be an obstinate pain in the butt, and call the Rheumo until you get some answers. It sounds, like you have met the diagnostic criteria for SLE, and he put you on Plaquenil, but, I'm not a Dr./Rheumo, so I'm only speculating.
Of course, these fears always seem to come to bear on a weekend, when you know nobody will be at the rheumo's office. For now, concentrate on the positives, you are on meds, it looks like you are responding, and your swelling and joint pain have subsided-a very good thing. One thing you can do right now to help yourself, is avoid the sun. Wear a hat, sleeves, and pick up some high SPF sunblock and use it. If you do have Lupus, UV exposure could bring on what we call a "flare", or sudden worsening of your symptoms. Monday, I'd be on the phone with the Rheumo and don't worry about feeling like you are "ocd", this is your life, and your health. You deserve answers.
Welcome to our group, and please make yourself at home!
08-01-2009, 10:32 AM
Hello and welcome and so glad you found us. I too have had similar experiences and am being tested every 6 weeks for Lupus.At christmas he said i did have it then bloods came back n he said its not Lupus,but recently been diagnosed with Fibromyalgia and they say i have M.E which is Chronic fatigue syndrome. I so understand how it feels to need a diffinate answer or a deffinate diagnosis.It begins to overwhelm you. I am so glad to hear the meds he has given you are easing you n helping,such good news. Maybe like Rob says,give the rheumi a call and explain how this 'not knowing' is making you very anxious.If they carnt sort it out over the phone ask for an appointment to be brought forward n soon.Just take one day at a time.Please know we all understand you, you are not crazy at all. There are quite a few of us here undiagnosed.But you have meds to help you and all of us here to support you through this.Anytime you need a chat or advice...we will be right here.
Love n hugs
08-01-2009, 11:39 AM
Thanks so much Rob and Amanda, I already feel better knowing you both understand! There may just be some communication issues with the doctors office. I will have to deal with that first thing Monday morning. Next time I will make sure to have a plan in place before I leave the office. I am not used to doing this for myself but if it were one of my kids I would have had all the details by now! It is hard for me to think of myself as someone who is sick. I have tried talking to my family about the possibility of a Lupus diagnosis and they really have nothing to offer in a way of support because they know nothing about this disease. I have also gotten some really stupid suggestions on how to get better. I know they mean well but honestly their kind of support is doing nothing for me right now. My husband has done some reading about Lupus and he is concerned but trying to make it no big deal, "just take it easy and you'll be okay, you don't have to work, just relax" all that is sweet and I appreciate it and I do need a break but I like to work and I want to work! Thank God I found this site. It will be a big help to me. I will update you all on Monday after I get some answers. Thanks again.
08-01-2009, 11:46 AM
Yes goodluck. Im glad you found us.My family and friends do not support me, i get that all that from here.And hopefully you will too.Thinking of you.Oh i too can help others with advice n plans but when it comes to me...DOH i fall apart lol.So its a natrual thing.
08-02-2009, 01:59 PM
i find that my rheumatologist always does blood work, and then i find out the results at the next appointment. I have requested a quicker appointment with her if i find myself anxious about the lab results, so you might want to call your dr. tomorrow, tell the receptionist that you are nervous about your labs, and see if the dr. can see you any sooner.
Also, i too went through early menapause...i was 31. Don't know if it is related to lupus because i was not diagnosed at the time, but there seems to be several members here who deal with this same thing.
I know lupus is scary, and i know your husband truly loves you and wants to help you. And actually, he is right, you need to get plenty of rest, reduce your stress, and avoid sun light and even flourescent lights. I can imagine some of the advice that you are receiving from your family....at first, mine kept suggesting different things as well...Now that we are all more educated about lupus, they don't try to advise me anymore....they just let me know how much they care.
so glad you are joining our "world-wide family of the sky", i know you will like it here.
08-06-2009, 06:10 PM
Hi & welcome to WHL!
I think the doctors truly don't realize how agonizing the waiting game is to us. If only they understood how frustrating it feels to have to wait to hear about our own selves what they already know from our labs...
I have come to a point in my health care where I now call the docs if I haven't hear from them a week after the test and kindly, but firmly, request that the lab & blood results be sent to me, even if I am told they were "fine" or "ok". Fine or ok might mean something specific to these doctors, PA's and nurses, but to me, it means nothing since I don't know what the results were. I now keep a file of bloods and labs that I take with me to all new doc appointments.
I completely agree with Rob, you should call the doc on Monday. You are the one who will take your health the most seriously, and that is not being OCD, it is being highly alert and aware. Good luck!
08-12-2009, 08:51 AM
Hi guys, so I had to make a special appointment to go over my blood work and my rheumatologist thinks I do not have Lupus. Seems the DNA strand was negative as was some other tests that I am not familiar with. He thinks my symptoms are all RA related so we are treating that as aggressively as possible with the Plaquenil, vitamin d and c supplements and also methotrexate since I have osteoporosis too. He also advised I do as much exercise as I can do saying the more the better. So, I am of course relieved that I do not have Lupus but I still have some symptoms that seem more like Lupus than RA. I will accept this diagnosis and do my best to move forward but I will continue to pay attention to those Lupus symptoms. Thank you, thank you, thank you to you all for your support during this difficult few weeks for me. I found so much comfort and knowledge in this forum. I will still check back and "visit" with you all! I am sending lots of love and good wishes your way! xoxoxo Dana
08-12-2009, 08:53 AM
I meant to say calcium supplements not vitamin c ! sorry!
08-12-2009, 04:53 PM
Just wanted you to know you are welcome here anytime. One thing is for certain about this forum....the caring, loving members here offer support, comfort and guidance that transcends a particular diagnosis. Dont' feel obligated to be a stranger simply because your label is RA, not Lupus.