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426 Views 6 Replies 7 Participants Last post by  fallinthruthecracks
Hi, my name is Kate and I probably should have posted here first, to introduce myself.

I am 28 years old and I live North of Seattle. This is kind of ironic but I work in autoimmune research. Not for that long, about 3 years. I have worked mainly with Diabetics and MS patients, but sometimes I have encounter lupus patients who also have MS in my work.

Anyway, I already kind of vented about my health history in another thread under not diagnosed yet.

My symptoms are joint pain in hands, feet and knees, when overheated,walking problems in my right leg, migraines that can last for days, and sometimes they don't, and now for the past two weeks I have had abnormal UA's, slightly elevated C-reactive protein, and earlier this morning I was in the ER because I couldn't breathe and my chest was tight, malar rash, sun sensitivity, maybe raynauds? Today, my rheumatologist said despite the clot blood tests not being positive yet, that I should still take aspirin daily. And, if my UA still has red blood cells and casts and no evidence of infection, my rheumatologist said I needed to see a nephrologist.

I have been told that it is very likely that I have lupus, but the diagnosis is probably still going to be a while. I guess I find several things very confusing. I know much more about Multiple Sclerosis and how that is diagnosed than I do lupus.

Here's my first question- is there anyone out there who has a pretty low ANA titer (1:40), but has had weird kidney and neurologic symptoms and eventually got diagnosed with lupus? It seems to me that with a low ANA titer, it would be a lot more likely that any lupus condition that I have would be way less involved. (I am basing that on what doctors have told me.)

My second question-do certain antibody tests like the ANA go up in the titer amounts? And, do some other antibody tests that predict lupus become positive later? ( I am assuming that the answer to those two questions, is yes, it's possible, but probably unlikely?)

As, one may have assumed from my previous thread, I have had some traumatic experiences in my late teens, and I know it is possible for some people to have something called conversion disorder. However, my rheumatologist seems to think that ignoring my symptoms and sending me to a psychiatrist could be dangerous if there is an actual physical problem that just doesn't have the blood work proof yet. Although the stress of being sick, and I find myself sometimes crying randomly, I will probably be seeking a therapists help while I go through this process of finding out what's wrong. Talk therapy works, and my husband may go to. The days when I have to use a cane scare us both. I have only been really sick for about 6 months recently. I have had health problems in my earlier 20's, but there had been a period of time, when I was relatively healthy. And, most of my health problems listed above have just been in the last 6 months.

I am trying really hard not to overthink things until I have more information. I am a little sad, because before I got sick 6 months ago, my husband and I really wanted to have a baby. I was hoping to be pregnant right now, and instead my FMLA leave is a less than happy one.

I am on 40 mg of prednisone a day and have started plaquenil, and will begin to taper off the prednisone tomorrow. Prednisone has done a lot for pain, but it seems like at a certain point it looses its affectiveness, for me, and kind of wonder if it's making me a little insane and causing the crying. We shall see what plaquenil does for me in three months. I know it won't address the neurological stuff, but should aid in the fatigue, joint pain, and sun sensitivity.

I have been tested for all kinds of other things like lyme disease, celiac disease, and I am pretty sure I don't have demyelinating lesions on my spine or brain based on the MRI's I have had. (However, in my line of work, MS lesions can take a while to show up on an MRI, and my rheumatologist reminded me of this, when we were discussing my abnormal walking.)

I guess what would make me feel better right now, is hearing that people find ways to cope with their autoimmune condition. I would love to know that there are people out there who are controlled quite well on plaquenil, and still have kids and can have happy lives once they are diagnosed and medicated. The MS patients I work with-some of them are very well controlled on medication, and live pretty good lives. Others have a very hard life, and that's difficult to see. I still love working with them. Most of those people are my heroes, and I have the upmost admiration for how they go about living the best life they can.

I am probably a pretty bad impatient patient, because of my job and I have definitely seen autoimmune diseases at their worst first hand. And, I know what tests are out there. Even though I have only been in autoimmune research for 3 years, I have prior clinical lab experience, and I know all the blood tests out their for all kinds of conditions. I am not a doctor or anything. I just have training in drawing blood, processing blood, some DNA and lab assays, medical assistant experience, bachelors in molecular biology, and was contemplating becoming a nurse practitioner or a physician's assistant and continuing in research and clinical care. I think all this makes me a tricky patient (nice to know a lot about what my doctors are telling me, but bad because I think some of that knowledge makes me an anxious person about my own health.) I am just explaining why I think my background makes me an impatient patient, I don't consider myself an expert on autoimmune related stuff by any stretch of the imagination, I may know a little more than your average person, but that's about it. And my knowledge about lupus compared to MS is extremely limited, with the exception of what I have read recently.

Anyway, that's me in a rather long summary.

Greetings from Washington.:worried:
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Hi Kate

I replied on your other thread but I just wanted to stop by here and welcome you again :)

Its tough being on such a high dose of prednisone. It can cause all sorts of problems for some people and your emotions can be all over the place with it :hugbetter: I was recently on the same dose and I must say I felt very edgy and touchy :rolleyes:

Welcome again Kate and I look forward to getting to know you
Hi Kate-

This is my first reply as I just registered on this site also. You are in the middle of the toughest part of all this, getting diagnosed. Hang in there. Your knowledge WILL be helpful to you. If you haven't already, it's good to get copies of your test results. Sometimes docs just provide a summary, while I personally like to see what's going up, down, etc.

I can't reply to all of your questions because I am also just a patient, but I can comment about the ANA tests in my experience. Prior to my diagnosis in 2007, I had short bouts with Lupus that didn't last long enough for a diagnosis. In 1998, my ANA was high (1:1280); still I had no diagnosis as my symptoms disappeared before a follow-up physical exam and additional tests were performed. Then in 2002, I had another bout with accompanying high ANA. The symptoms disappeared immediately after I saw the rheumatologist, so once again Lupus was not diagnosed. Then, in Nov. 2006, I started having the worst pain all over my body after two viral illnesses in a row. My ANA was high, but my dsANA was negative. I was sent to a rheumatologist who followed me and listened to my complaints and re-tested me regularly. The dsANA started going up as my symptoms continued. In APril when I was diagnosed, my rheumatologist at the time diagnosed mild Lupus. By July 07, the dsANA was high and now it was clear that I had Lupus for sure. So, long answer to your questions, yes the ANA results can vary. ANd I think you can have symptoms for a long time before some of the results actually appear to be Lupus.

Re: the baby issue. DOn't despair here. I hear that it is more than possible to have a baby if you have Lupus, though stabilization of symptoms is usually a must before you start trying. Just take care of yourself and the rest will follow. I was fortunate to have my first child before I had any symptoms and while I had my first symptoms immediately after the birth of my first child, my symptoms disappeared for 4 years, during which time I had my second son without any complications.

Re: PLaquenil. I was prescribed as soon I was officially diagnosed and was told that it could take 6 mos to see the maximum benefit from the drug. It seems a long time to wait, but I really do think that it helps stabilize things and have heard recently that it can keep you from developing more severe symptoms (though it probably doesn't prevent flares, which are a challenging part of having Lupus). It was given to me to prevent my symptoms from spreading to my internal organs and so far, so good. You just have to give the drug time. And any concerns about side effects should be addressed by getting opthalmological exams every 6 mo (my eye doctors say that damage from Plaquenil are extremely rare--saw only one case in over 30 years of practice).

I haven't read your other thread and hope some of my reply wasn't redundant. Best of luck. Hope your road to diagnosis doesn't go on too much longer.

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Hi Kate!

I don't check this site much anymore, but happened to today and saw your post. I am 25 and live in Seattle. If you ever need to vent, I'd be happy to listen! I've been diagnosed for almost 2 years now. I was diagnosed with a low ANA (mine was 1:160), although I had low blood counts to support my diagnosis. Each time I flare, my white blood cells dip and sometimes my platelets do. When I was finally referred to the Mayo Clinic, they were the ones that recognized this dip in my massive pile of bloodwork from the previous years.

Good luck and let me know if you ever need doc recommendations. I have a rheumatologist that I like and a neurologist that I LOVE!

Hi Kate

I am responding to your complaint about the emotional instability. I am told by my rheumatologist that it is the disease, although some drugs like methotrexate and prednisone are also suspect. I was given a drug called Cymbalta. Absolutely fantastic. It had my emotions under control by day 2 although it's not supposed to work that fast. Is also supposed to help with pain relief, although I can't say it has made any difference to me. There is info about it on the internet.

All the best, Rose
Hi Kate,
Welcome and sorry you are having these problems. There are medicines that can help with the emotional end of things, and pain pills that help also. I to was going to start cymbalta but elected to do something else.
hi kate

i really identified with your post. i used to live in seattle and work in teh medical research field. and i'm struggling through the diagnosis process as well. i don't know exactly what my ana titers were yet. but i know that one was a lot worse than the other one. i know that's not very insightful. but i just wanted to say hi and nice to meet you.
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