Introduction and question...
My name is Carol and I am happy to have found this forum. I am an RN and my journey here has been difficult and thoroughly frustrating!
My big question for you all is... Can a person have lupus with ALL the signs and symptoms without ever having a high sed rate and not consistentely having high ANA titres? I am so frustrated!
The first time I ever had bad symptoms was around 25 years ago and I was treated like a hypochondriac. More recently, my symptoms flared a year ago last May. I had no idea what was going on, went to eye doctors, regular physicians etc and to be told pretty much "We don't know what's wrong with you but here, take steriods and hope for the best." (Not in so many words.) I had several milder flares over the course of the year. THEN:
This May, I took a trip to Cali with my two daughters, 3 grandbabies etc. It was somewhat stressful and we spent 12 hours walking around Disney Land in the sun and we also hit the beach. On the way home (we drove) I got hit with the WORST flare ever. It started with joint pain, then everything hit. By the time I got home, I was totally miserable. Fortunately, I had prednisone with me. I had the joint pain, chest pain, I even had a severe heart murmur with it (I went to ER because I was just so miserable), fever of 101.6 for no reason, malar rash, discoid rash only on my back mostly, severe exhaustion, even the dry eyes, everything. I could barely walk across the room. It was scary and horrible. I took the steriods until symptoms became managable (I always taper down), waited two weeks and had an ANA drawn. It was slightly elevated so they sent me to a Rheumatologist. By then, all the symptoms were gone it was August by the time I got in. The doctor, when I explained and described my symptoms, said "I don't see any of that." I said, "That's because I'm not having a flare right now." And of course, my tests were all negative. He concluded that I must have hurt my neck! Really? And that explains ALL those symptoms??? Grrrr!
I gave up on doctors at that point. It seems if you know anything at all about your own health, doctors won't listen to you. I do my best to treat myself with Ibuprofen, Tumeric and L-lysine and Prednisone for severe symptoms. I am in the midst of a mildish flare now. I haven't had to take the steroids thankfully and am getting by.
I am just wondering if anyone has any similar stories? And ideas? Any hope to offer? This is so frustrating and I don't want to go to another doc and be treated like a hypochondriac again. I NEVER get sick, I NEVER go to the doc, this is about the only thing I have even seen a doc for in YEARS so it's not like I am constantly going in for every little thing. As I look back, I recall times of having flares even as a teenager and young mom. And I am afraid because my oldest daughter seems to be having symptoms that mimicked mine almost exactly when I was her age and had that original flare in my 20s.
Sorry this is rambling!
Hey Carol and welcome!
If you read other posts you'll find one from me - I switched to a new rheumy last week and my favorite thing about her was what she said: "I don't treat lab results, I treat the person". I'm so excited about her I can hardly stand it.
But to answer your question: YES. Your rates/values/etc can fluctuate depending on the stage of your disease and whether or not you're flaring. I also have APS and my antigen values go up and down. You can also be ANA negative and still have Lupus. But I completely understand how frustrating it is to feel horrible and have your tests come back normal. My old rheumy was a great guy but relied too much on tests; he was confident of his diagnosis because of older tests but sometimes when I'd go in and say I feel horrible (etc., etc.) he'd say, "well your labs look great, so I'm not sure what's going on" and it would just frustrate the snot out of me. Unless my labs were absolutely death-stage horrible he wasn't really going to do anything.
My advice? Find another doctor! Hang in there!
The Following 2 Users Say Thank You to prothumos For This Useful Post:
kitypat (10-21-2011), steve.b (10-21-2011)
I agree with Robin, you need to find a doctor who will treat you - with or without a diagnosis. Who is giving you this magic prednisone? Obviously they think you have something going on or they wouldn't be giving you free reign to treat yourself - which also seems like a sneaky way to get out of making a diagnosis. My cousin (also and RN) talks about PPN (Piss Poor Nursing). I would say you are getting PPM (Piss Poor Medicine) from everyone. Were you referred to a cardiologist when you developed the fever and murmur? Why did they wait until you were better to get the ANA and sed rate? Stuff like this makes me crazy!
Ok, deep breath... if I were you, I would start asking around about other rheumies. You probably know other nurses and some docs - who do they like? Go to the online physician rating sites (visit as many as you can) and see who patients like. Check the status of medical licenses (my first rheumy was bopping one of his patients, and feeling up others - it was right there on the state site). See if the doctor will make a "meet and greet" appointment, and if not, make it clear from the start that the appointment is an interview to see if the two of you can work together. Be upfront about the lab issues.
Unfortunately, as you read other posts, you will discover that your experience is VERY common. Doesn't make it any easier to deal with, but there are plenty of others here who can sympathize and advise you.
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I appreciate your replies! It really helps to know I am not alone. I guess I will have to check out doc in adjoining states. I live in Wyoming State, (I love Wyoming) BUT there are a total of two Rheumatologists in the entire state. The one who actually lives in the town I am in is a total quack. The other is in our state capital and that's the one I went to who told me I must have hurt my neck, LOL.
I have had a heart murmur for quite sometime, it is only noticable when I am really sick (rarely) or when I have a flare. And of course, the ER doc just said that I "must have some kind of infection somewhere but not sure where" because of the fever. When all this first started (in recent years anyway, a year ago in May), because of my symptoms my GP said he thought I had Temporal Arteritis and put me on prednisone. Of course, the sed rate came back normal so he said that couldn't be it but since the prednisone helped he let's me take it when I need it. I hate it but it takes the pain away, or at least makes it bearable. When I have a flare, it starts with the wierd vague (Oh geez, is this a flare or just a coincidence??) kind of stuff. Mouth sores, feeling run down,rashes, some aches and pain. Then it hits big and majority of my my pain is in my arms, shoulders, sides of my neck and head. And sometimes my hands. Then it just depends on how bad of a flare it becomes.
I guess I will have to look to neighboring states for a doc. Colorado or Montana? Any ideas? When this last one totally discounted EVERY SINGLE SYMPTOM I have EXCEPT neck pain, I just wanted to cry....
welcome to the whl family look forward to getting toknow you most of have been treated like hypchondriacs at one time or the other this disease is so complicated.
Welcome Kitypat. Yes, sadly your experience is all too common. I guess I'm a hypochondriac too...sigh!
Anyway, it's a great group here. They sure have helped me. I hope you find some answers here.
as a nurse you would have seen doctors guessing several times.
unfortunately auto immune disorders are not text book problems, therefore doctors have to guess.
some are better at it than others.
please remember you are not alone, there is a couple of hundred members of this forum......
we are here to help each other .
welcome to our family.
Welcome to WHL. Unfortunately, many of us have been through what you are going through.
I attended a Sjogren's Conference a while back, and one of the speakers was from a Jewish Hospital in the Denver area. He was quite impressive.
Hope this helps.