I'm new to the forum, and I have not been dx with an autoimmune disease yet, but my primary doctor strongly suspects something autoimmune, so I have been referred to a rheumatologist. My appointment is next Thursday, and I honestly don't know what to expect. I also don't know what is the best way to prepare for the appointment. Have any of you actually written out your entire medical history of symptoms and possible triggers to your attacks and given it to your doctor? Would that be too much? I am only thinking about doing this because I have a hard time remembering everything!
I basically got referred to the rheumy because I have a history of these sudden "attacks" that have gotten progressively worse. The first was about 5 years ago - unexplained sharp chest pain when I breathed in. Tons of tests, all that came back abnormal was my sedimentation rate (ESR) and either my heart or lungs looked a little enlarged on the x-ray. I was in school at the time, and the student health doc had no clue what to tell me (because ANA was negative), so I diagnosed myself with pleurisy, took 3x normal dosage of Aleve for 2 weeks, and the pain went away. Did the same when I got the same pain about 2-3 years later, but didn't see the point of going to a doc, since they couldn't help me last time. My next attack was this past December when I had this sudden, severe attack of pain in the joints of my hands and arms. Again, ESR was elevated, but this time I was given prednisone. The prednisone was a double-edge sword - it got rid of my inflammation which was WONDERFUL, but I work with little kids and caught a BAD cold due to the weakened immune system.
My most recent attack last month was the worst - I had severe pain in my fingers, wrists, feet, ankles, EXTREMELY FATIGUED (not just "tired", but to the point I can rest all day and still feel wiped out), bad muscle aches especially in my upper arms and lower legs, I have been extremely sensitive to light, such that my eyes hurt, I feel nauseated, and my symptoms get worse any time after I've had any exposure to heat and light, I have scaly bumps across my cheeks and nose (although I've had these for months), both sides of my chest hurt, and it's hard for me to breathe. Sometimes I literally lie here and feel like my entire body is on fire from the inside. Naturally, my ESR was elevated again and I am still anemic (have been struggling with this for about a year) which is what prompted my referral to the rheumatologist. But the worst is that my doc would NOT prescribe me wiht prednisone, because she didn't want it to affect any blood tests the rheumy might run - so I've just had to suffer in pain, taking 800 mg Advil 3x a day with little relief. In addition to this, I have a history of constant infections (chronic bronchitis, sinus infections, UTIs and kidney infections), have had red blood cells in my urine a few times before even when I didn't have a kidney infection, I've had four 1st trimester miscarriages (the first of which happened 2 months after my first elevated ESR) a history of migraines and tension headaches, history of depression/anxiety, severe PMDD depression (coincidentally my past 2 attacks happened in the latter half of my cycle, when my hormones are the most out of control), and my hay fever and other allergies I was supposed to "grow out of" according to my pediatrician have only gotten significantly worse as I've gotten older.
All of these seem to be classic autoimmune issues - and the fact that I am a 28 year old A-A female with paternal aunt who has lupus and a mother who has a history of rheumatic fever and possible rheumatoid arthritis further increases my risk for an autoimmune disease. But the problem is that the nurse told me my ANA and rheumatoid factor last month were negative - but she didn't give me any specific numbers, so it is possible my results could be "borderline", who knows. So my biggest fear is that I won't get a diagnosis without a positive ANA, in spite of my repeated elevated ESRs, and I will continue to be at the mercy of the uncertainty about when my next relapse will be. I worry that I will have to sit around and wait to get a positive ANA to get a diagnosis, and I won't be taken seriously until it is positive. I have missed so much work over the past month, I cannot keep going at this rate, and I really want to know what's going on so I can learn how to manage whatever is wrong with me. I do NOT want to wait for an ANA to be positive ten years from now, when whatever is wrong with me has gotten so much worse. My husband and I are in the process of trying to foster/adopt children, I have a job that I love, but that is a bit demanding at times - and I don't have time for this!
I am at my wits end, and just looking for any advice from anyone as to how I can get the most out of my rheumatologist appointment. It has taken me nearly 2 hours to write this post, because I've had to take so many breaks due to the pain. How can I assure that this doc takes me seriously? I don't feel as bad as I did a month ago, but I still feel horrible, and at this point I'm planning to spend a ton of time outside this weekend just to make sure whatever I have is in "active mode" when I see the rheumy - how pathetic is that?? I have already had one mini relapse this week that I think was triggered by going out of town, being exposed to a lot of sunlight while driving in the car, being outdoors, and general sunlight and heat. Sigh.
Thanks for reading all of this, and I appreciate any advice anyone can give me!
For me, it took me awhile to be able to convince my primary Dr. to send me for a Rheumy consult. I had already been diagnosed with 2 autoimmune diseases, and I had a ton of symptoms. Anyway, I started writing down my symptoms every day in a journal. I finally got him to humor me and he sent me to the Rheumy. I typed up and printed out my medical history and also my family medical history. I also typed up my symptoms and brought those too, mainly so I wouldn't forget to mention something.
All of the labwork that the Rheumy did came back totally normal. I was so afraid that they wouldn't help me. My labs still come back normal, but I've been diagnosed with UCTD for almost 2 years, and have been on Plaquenil the whole time. It has helped me so much.
My current Rheumy says that she has a few patients who are seronegative, they know that something is going on, they just can't pinpoint it.
Dear Minerva, Welcometo the group! But I'm really sorry you have so many things going on that bring you here.
Taking notes to your rheumie appt: I was told to fax ahead a brief medical history, with recent labwork, skin biopsy results, etc. I forced mine to one page, with headers for "Early History" and "Recent". I kept "Early History" brief, but provided more detail for the "Recent" section. At the bottom, I listed attachments with dates. Even though you weren't asked to do this, how could it hurt? Make two sets & offer the "extra" to the rheumie.
Have you read the "sticky posts" at the top of the thread list? One has the ACR criteria for systemic lupus (SLE). You must meet at least 4, not necessarily all at once, to be Dx'ed with SLE. (FYI, there are also "subsets" for which people may meet less than 4 criteria.)
Another "sticky" describes antiphospholipid syndrome, which can exist standalone or in conjunction with lupus. In light of your multiple miscarriages and severe headaches, one thinks of APS also (but I'm ONLY a patient). I felt so bad for your husband & you when I hit that part of your post. I know how that feels.
And the "sticky" on TEST RESULTS contains a resource. When you go to it, you'll find quite a list of specialized blood tests, etc. done when lupus &/or APS are possibilities. These tests are MUCH more useful than mere ANA. ANA is actually only a "threshold" test. It may be positive in a variety of conditions, so it's not considered "diagnostic" for lupus. It does, however, count as meeting one criteria.
I hope you post more after studying the "stickies". They're an excellent intro to more detailed reading & discussion, both with your drs. & here. Bye for now, Vee
P.S. I was ANA-negative. In my late 30's I started getting photosensitive, nonscarring torso rashes. This was after decades of joint & shin pain, elevated sed rate, low-grade fevers, hair loss, migraines, mid-back pain, sciatica, anemia, horrendous irritable bowel, urinary & eye infections, stones, etc. I was Dx'ed with the subacute cutaneous subset of lupus (SCLE). In this subset, a meaningful % of people are ANA-negative. So I fooled everyone, including myself.
I second Veejs' reply, and wish you all the best with this rheumie appt. . I would definitely tell the Dr. about your family history of autoimmune disease. Be very descriptive of not only the pain you feel, but how it affects your life, for example, "I like to chat on the internet, but I can't do that near as much as I want to because of the pain". Hang in there Minerva , the road to diagnosis can be a difficult experience.
WOW....what a lengthy list of symptoms you have and I am sorry you are dealing with so much. I went for so many years of being misdiagnosed with MS to doctors never finding anything wrong with me that I swore I would never go to another doctor again. I started to question myself "Am I crazy, and I imagining things, am I a hypochondriac?"....all these things went through my mind. I did actually try to block things out when I would flare, which at the time I had no idea I was "Flaring", I just knew something wasn't normal. I ignored things as long as I could until i suffered a major flare with CNS involvement and I was scared to death. Even still, i went to my doctor and he couldn't find anything wrong so he sent me to a Neurologist and after numerous tests, he couldn't find anything wrong so i suffered at home, barely able to get myself to the bathroom. I had never experienced such overwhelming weakness that just totally consumed me. My daughter had the flu and was home from school for a day and she was so sick, poor little thing and I have to tell you, that's when I knew I had to find out what was wrong with me. It took everything I had in me to take care of her. i thought I was loosing my mind and I told my husband that something would happen to me and nobody would know what to do because they couldn't find anything wrong with me. Well, it took another year as the flare spread like wildfire throughout my body until my Neurologist finally did bloodwork and my ANA was positive and he sent me to a Rheumatologist who eventually diagnosed me. If you don't have a diagnosis, it is almost like having a diagnosis anyway since they only treat your symptoms, just that the diagnosis let's you know that you are NOT crazy. I wish you all the luck and hope you get the diagnosis you are looking for. For me....I'd like to give mine to anyone that wants it.....I want my old self back!
Thank you so much for your responses! It is definitely good to know I'm not completely alone in this.
Connie, I really relate to what you're saying about that wondering "am I crazy?" Part of why I feel like I am pushing for a diagnosis of SOMETHING (whether it is eventually lupus, some other autoimmune problem, or something completely different) is so I can finally feel confident that this is not all in my head. I spent so many years as a teenager on through college being made to feel like every problem with me was psychosomatic, and that is a big part of why I hate doctors and don't trust them. But as I have grown older and started to analyze my symptoms more and more, I have learned to tell the difference between when I feel bad because I'm depressed, or when I feel bad because I feel awful physically and that is in turn causing me to be depressed - and then the cycle continues. And I've also realized how my hormones play into all of this, after my doc dx me with PMDD last year, and it suddenly clicked that every major, almost psychotic breakdown I have ever had has been during my premenstrual time. In grad school, one doctor almost dx me with being bipolar, because of my severe mood changes, and just now I realized that was likely severe PMDD all along - unbelievable. More and more, the luteal phase of my cycle has become a very dangerous time for me - at first due to my emotions, then increasing physical fatigue, then early pregnancies that I think were doomed at implantation, and now due to these inflammation attacks and pain - sheesh. I would almost be completely relieved when my cycle started if I didn't also struggle with anemia on top of all of this! But that's another reason why I wonder if this could be some kind of rheumatic autoimmune thing, because I've read in several places how the premenstrual time seems to be worse for women with these types of conditions. And at some point, you start to wonder how much of this is just a "coincidence" and how much of it is because there is truly something underlying that is being partially triggered by hormones.
VeeJ, thanks for advising me to look at the info, especially the info on APS and the second post on diagnosing lupus. I came across those "other criteria" that doctor listed on some website I couldn't remember, so I'm glad to be able to find and read it again! I've gone over the "4 out of 11" sxs thing for lupus about a thousand times on a thousand websites, but I never looked at info about APS because I had already been tested for that several years ago when I underwent m/c testing. I had no idea that anyone would even consider that as a diagnosis without the positive phospholipid antibodies, and had no idea that antibody results could change! I guess I just always assumed this was something either you had or you didn't, and if you tested negative for it once, it would not be a problem. There apparently is so much I don't know about antibody testing in general, but now it makes sense as to why it is so hard to get a diagnosis for anything, since the presence of these things can change. When I had m/c testing about 2 years ago, I was tested for a bunch of clotting issues, but now I wonder if it's worth asking about follow-up testing, in light of these new physical sxs. Since my husband and I stopped trying to conceive, and probably won't be again for several years (if ever), I really haven't thought about this at all. This at least gives me something else to ask the rheumy about. Fortunately, I love my gyn (who is also a reproductive endocrinologist) and it would be a little refreshing to make an appointment to do some more hormone and antibody testing, that is NOT related to ttc. Maybe they can shed some light onto what could be going on as well, especially any connection to hormones.
I appreciate being able to post about this, because just writing this out is helping me feel more prepared about what I need to do. I just hope I'm able to get some answers soon, and hopefully start feeling at least well enough to start tackling whatever is going on.
Minerva, I was also bowled over by the list authored by Dr. Graham Hughes. He's very well-respected in his field. Elsewhere, I read that he calls this list his own "alternative criteria". These things, he wrote, are very common in those who develop lupus. When I read the list, I saw my childhood!
I hope your appts. go well & bring you closer to answers & more help. Good luck! Bye, from Vee
Hi, Fish Lady. Rheumatology is a subspecialty within internal medicine, as are cardiology, gastroenterology, pulmonology, etc. They are certified in internal medicine, then they do more training & get the additional certification.
Rheumatologists diagnose & treat such connective tissue diseases diseases as rheumatoid arthritis, lupus, scleroderma, mixed connective tissue disease, undifferentiated connective tissue disease, etc.
Hope this is what you were after---give a yell if it wasn't, OK? Best wishes, Vee