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Date Joined Jun 2009
Total Posts : 1
Posted 6/15/2009 12:57 PM (GMT -6)
First and foremost, I want to thank everybody for taking the time to read this. It started out pretty short but has gradually gotten longer, so I do apologize for that.
I finally caught a break and convinced my mother to help me make an appointment to see a doctor regarding my lupus symptoms. I have been long regarded by my sibling as a hypochondriac because admittedly I do seem to have a lot of minor complaints about
arthritic pains and inflammation. Because of this my entire family has tended to not take me very seriously when it comes to my health.
I was tested for lupus at a very young age when I had a bit of a health scare but I was shown to not have lupus, as far as my doctor was aware. I understand children at such an age are even harder to diagnose than adults. I'm an adult now - or nineteen, rather - and I want to give it another try. This is because lupus would accurately explain every single one of my health qualms, from difficulty thinking to heart pains. Some of these symptoms have gotten significantly worse over the past few years and I'm now worried that if it's not lupus, it's something much, much more serious that needs to be addressed immediately. However, I'm pretty sure it's lupus. It even runs in my family, though I am well aware that it's not much of a factor is a diagnosis.
My mother has been very quick to blow me off, as she beliefs if I had lupus there would be no point in being diagnosed because there are no "curing" treatments. However, even with this in mind, I would much rather know what I have so I can stop worrying that it might be something worse. I have heart pains almost daily that get quite frightening at times and if it's not lupus, then it needs to be checked out soon. Plus I am not sure why my mother would think this was grounds for inaction considering lupus can also be very serious in some cases. We do not have insurance and she has reminded me of this a few times now but I am more concerned about
my wellbeing than money at this time and regret to say that I think her viewpoint might be the other way around. She's also fixated on the fact that I do not have a butterfly rash on my face, though I have tried to explain to her that not all types of lupus have such a condition, but I was met with silence.
I have a question regarding my upcoming visit to the doctor. It's been suggested to me a few times by people in other forums that I should not outright tell my doctor what I believe I might have - that they are more likely to diagnose you when they believe they've done that work on their own. However, I'm afraid that because so many symptoms of lupus are symptoms of other illnesses that my doctor would overlook lupus as a possibility. I'm also afraid of being written off by him/her as a hypochondriac if I list a bunch of symptoms like difficulty thinking clearly and arthritic pains and the like. I personally think it's wiser to say "Look, I know you'd rather discover this on your own, but this is why I want to tell you why I think I have lupus." I really, really would like to be taken seriously and will do anything possible to make this the case. I have faith that any reasonable and respectable medical professional would not be quick to dismiss my claims, but my mother is a former nurse so I fear they might be more willing to listen to her than to me.
With all of this in mind, what do you think is the best way to approach this situation? Should I tell my doctor about
all my symptoms and hope they look into lupus, or should I tell them that I think I have it? At this point I'm leaning towards the latter but I'm still not sold. All I want is for somebody to just listen to me.
I've compiled I list of my symptoms if you find this knowledge useful in any response you may give me. I've listed them in order of commonness and severity - joint aches and inflammation, heart pain, extreme fatigue (often to the point where I cannot keep my eyes
open, regardless of my amount of sleep), difficulty thinking (I fear this has gotten worse the past couple of weeks, though that might be due to stress), pleurisy/general chest pain that is occasionally (though very rarely) followed by fits of shortness of breath, cold and white feet/fingers, generally a lower than average body temperature that spikes into a moderate fever almost nightly, easy bruising (this is what triggered my lupus scare as a child), anemia, and some memory loss, though with time I tend to regain that memory if that makes much difference. My main concern at this point is my heart; like I said, if it's not lupus, it's gotta be something worse. And the reason why I believe it's lupus is because I think inflammation in my chest might be making it difficult for my heart to function. My heart rate is rarely too fast - in fact it's often quite slow, though sometimes irregular - but when it's in pain, the beats are very faint, as if inflammation is causing tissue around the heart to expand so that it cannot beat fully. Sometimes taking an aspirin will help this. I've also noticed occasional hair loss as well, namely in the shower, but I'm not sure if I would consider this an issue because there is no visible balding or anything, though I am unsure if actual balding is a lupus symptom or if it's just hair loss. I've also had urinary issues before where I was not shown to have a UTI but had a high white blood cell count. Such issues are usually very minor and go away within a day or two but a few times I've had issues that lasted weeks on end and were extremely uncomfortable. I know kidney inflammation and other issues are somewhat common in lupus patients but I don't know if urinary problems are a part of that.
So again, what would be the best way to approach the doctor? Please let me know if you need any more information to make a better suggestion. Thank you in advance for any help; I greatly, greatly appreciate this.
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Date Joined Jan 2004
Total Posts : 4151
Posted 6/15/2009 11:00 PM (GMT -6)
That's a tough one. My experience was a little different because I was a little naive in the beginning. I basically told my pcp that I thought I had mono because I was having sx that I could only think that may be it. He ended up doing that test and also some others. When those others came back irregular he sent me to a rheumatologist. At that time, I only thought rheumatologists treated rheumatoid arthritis (yeah, I know, but I DIDN'T know LOL) so I didn't have any idea.
Most doctors have paperwork that you fill out in the beginning that will pretty much spell out symptoms and you check if you experience them or not. That's how my doc's paperwork is. Maybe that will be the case for you and you can just answer the forms. But somehow you need to communicate all of your symptoms because its much like a puzzle and your symptoms are the pieces. I hope it goes well for you. Please let us know.
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007, Localized Scleroderma 2009
Meds: Plaquenil 400mg/day, Pred 2.5 mg/day (tapering), Methotrexate 10mg/week, Hydrocodone PRN, Fiorinal PRN, Baby aspirin, Prenatal Multi, Vit E, B12, Fish Oil, Biotin, Calcium, Folic Acid
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Date Joined Aug 2008
Total Posts : 330
Posted 6/16/2009 12:25 AM (GMT -6)
In my situation I had no idea what lupus was, I just know I had been extremely sick, to the point I was hosptialized and after many tests, surgeries and the like I was referred to a rheumatologist who dx'd me with the dreaded "lupus" label! When I first began feeling badly, it was like a light switch that was flipped and I was seriously, seriously ill.
I had major heart, chest pains as you are describing, joint pain (horrible, horrible joint pain) severe exhaustion, major migraines, brain fog, sun sensitivity, and the list goes on and on and on. I described my symptoms to the docs and thought "I must have cancer or some kind of horrible virus, but never, ever did I suggest any such diagnosis to my medical team. I think I was better off as a result, they ran test, after test and they came up with the dxs fairly quickly. I really do think that doctors in general question the validity if they are met with a "self diagnosis" and thus they hesitate to take that route. This is simply my opinion, take it for what it's worth, but I personally would not say "I think I have lupus" because they may not take you as serious. Simply go in and provide a list of aliments, then let the medical professional run tests. After the tests are run if you still do not have answers, then perhaps you could (should) mention "could this possibly be lupus?" I don't feel it's as though doctors want the glory of diagnosing you or solving some great mystery, but rather they are more adpt to take your symptoms seriously.
On that note, please remember if at first you don't susceed try, try again. Meaning, it could take several specialist and many months (years) to get a diagnosis and then it still may not be lupus. Please don't get your heart set on a lupus diagnosis, after all the label is not what matters, but that your symptoms are addressed and treated so that you may feel better and live a healthy, happy life.
Best of luck to you on your journey for answers.
Lupus - 1997 Fibro - 2001 Sjorens - 2007 Raynauds - 2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis
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Date Joined Sep 2005
Total Posts : 2573
Posted 6/16/2009 6:28 AM (GMT -6)
Never try and tell a doctor what is wrong with you as far as a diagnosis goes when you think it might be lupus. They look at you like you are crazy and then when the visit is over they write hypocondriac in your file. I experienced this. Doctors like to think they are god and know everything. Make sure you take your symptom list and that it has dates (aprox) of when each began. Take pictures of rashes with you just in case they aren't there when you see the doctor- I have had a perfect butterfly rash disappear while I was in the waiting room if the doctor's what rash is to be believed. Also do not be afraid to walk out on a bad doctor. Never let them tell you it is all in your head and don't believe it if they try. There are suggestions in the lupus resourses thread.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
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