View Full Version : 11 years...still no diagnosis
07-21-2008, 08:30 PM
Hi! I'm new to this board, attracted to it by my own frustration over lupus-like symptoms scattered over the course of 11 years. I'm a 22 year old female.
I'm going to summarize the symptoms I have experienced. I would really appreciate any feedback if anyone has had similar experiences. I have been tested for lupus numerous times but never had a positive ANA.
1997 - ITP - platelet count dropped to 3,000 - doc said it was caused by a common virus that I had a week or so prior
2000 - Pericarditis - Pediatrician dismissed my chest pain, it took awhile for my parents and doc to realize the severity of my chest pain, by the time they realized what was wrong I needed a pericardial tap.
2001 - 2008 - Recurring episodes of pericarditis - The first time fluid actually did develop and I was treated with Prednisone. The rest of the flare-ups just include chest pain (probably the pericardium beginning to become inflamed) and treat it with a round of prednisone.
All thoughout high school - minor joint pain. My knees would hurt and swell, usually during cheerleading season. Doc dismissed as "growing pains" or the need for stronger quad muscles. Recently, I've been experiencing jaw pain, mostly when I wake up in the morning.
Within the past year - periods of fatigue that come and go. I generally get about 7 hours of sleep at night but a lot of times I feel like I physically cannot go through the day without a nap. I also run a fever of about 99 during these phases.
Sun sensitivity - never any rashes like many of you have described, but I do burn more in the last few years than ever before, I have olive skin and have never been one that burns. Also, I had a bad flare up of pericarditis following a week at the shore (senior week of HS, I've never spent a week at the beach otherwise).
Within the past 3 months - Esophagus trouble - Sometimes I experience what feels like indigestion, but it passes after a few minutes. Twice, however, I have had to vomit the food because it feels blocked in my esophagus.
Weight loss - Since 2004, I've gone from 112 to 98 pounds (I'm 5'4") without trying.
I've talked to either my primary care physician or cardiologist (who is also a rheumatologist) about all of these symptoms. My cardio's thought is that I have some sort of mixed connective tissue disease or lupus that has not fully manifested itself in my body yet. It's hard not to know exactly what is or is not wrong with me!! I critically analyze everything that I find wrong with my body.
Any feedback is greatly appreciated!
07-22-2008, 02:10 AM
Hi and welcome to the site. I am wondering if they have run any tests for Lupus? It sure sounds to me like you may very well have Lupus. Have the doctors run an ANA and sedrate and serum compliment tests on you? If not, you may need to see a different Rheumatologist. I have Lupus and have had it most of my life. It is a hard disease to diagnose. In my case it took literally 30 years, because in my case it was insiduous big time and it did not fully menafest itself until I was 35 years old. I hope that you get an answer and soon and that you do not have to suffer like I did.
07-22-2008, 07:36 AM
You certainly do sound like you have symptoms of it. I am one of the very few who have been Dx with lupus but have a negative ANA. I think there are MANY more people who have lupus, but it has yet to show up in the blood. I have been sick for almost 10 years, and was finally Dx in June.
Are you sick (in a flare) right now? If so, maybe your doc can prescibe prednisone to see if it makes you feel better. Very few doctors, from what Ive been able to find, will treat lupus with a negative ANA. It is so unfortunate - believe me, I went through hell for years.
If you are not sick right now, I would really try to enjoy it. If you do have lupus, you will eventually flare, and maybe your blood work will change and you can get treated. In the meantime, you can start looking for a new rheumie. The next one could very well believe you DO have it now, and will start treating you. I KNOW its frustrating...the system needs to change so badly....
I hope you stay persistent...But if you ARE feeling well right now, please try to enjoy your life!!! You are so young!! I critically analyzed every symptom I had for years and. looking back, I wasted alot of "healthy" time doing so....
Take care and keep us posted on how you make out -
07-22-2008, 08:20 AM
Hi Jax, welcome aboard. I understand your frustration. I've had symptoms of something for 5yrs now. I was told late last year that I had FMS and CTD. Although there are many CTD's. Fun part now is figuring out which one. Its very aggrivating, but there is no one test for lupus. Docs have to rule out so much first as well. Keep a diary of symptoms, it helps. My docs liked it, helped since I can never remember everything when I go in. Patience is the key, our bodies will show when ready. Hopefully your docs will put all your symptoms together and figure out what it is. Unfortunately when we're kids, so much gets chalked up to "growing pains". Also, no one takes you too seriously on pain. Always treated like your over reacting. I'm 34, trying to deal with all ths too and still get treated at times like I'm over reacting. Relax the best you can as Lauri put it. I feel bad you've got to deal with this at only 22. Enjoy as much as you can, you never know when your body will have a good day or a bad day. Good Luck :D .
07-22-2008, 09:16 AM
Thanks for the responses so far..
Kathy - I have been tested for Lupus multiple times. If I had to guess it would be about 8 times? ANA, Sed rate, CBC, etc. I've lost track. They usually take blood work when I'm in a flare-up of my pericarditis, but it's never positive. My Complement levels have been high (C3 and C4 - I'm not sure what these mean) but apparently it is a clue to some sort of CTD.
Lauri - I find it very interesting that you have been dx with lupus and don't have a positive ANA. My cardio/rheumie told me that even though he doesn't feel a Lupus dx would be appropriate at this time, I should still live as if I did have it, ie - get enough rest, eat well, avoid stress and sunlight (that one is particularly hard, I love being tan!) Thanks for your advice to enjoy life right now. I'm fortunate enough to be healthy more than I'm sick.
Cheryl - That's a really good idea to keep a journal of symptoms. There are a lot of minor things that I forget about when talking to doctors. Even in this post, I forgot to mention that my hair used to be super thick, but within the last four years or so it is noticeably thinner (noticeable to me, and my mom at least).
Thanks again for all your posts. I'm still curious to learn if anyone has had similar experiences/symptoms as me.
Has anyone ever had an excema-like rash all over their hands, feet, elbows, knees? I had a strange outbreak last spring and the dermatologist said it looked like dishydrodic (sp?) excema.
07-22-2008, 10:22 AM
Hey Jax -
I know - I was VERY lucky to have gotten the Dx without the positive ANA. I have had so many specialists over the years say, "You have lupus," only to change their minds when they look at my ANA. I once had a nephrologist (kidney doctor) come in my hospital room (I was in the beginnings of liver failure at the time) and say, "So, Laura, you have lupus, right?" I said "No, I dont" He insisted and said, "I was just looking at your kidney 'something'(dont remember if he said cells, urinalysis, etc) and you sure do appear to have lupus" I told him that many docs over the years have said the same thing, but I have a negaive ANA. He ran more tests, and a week later said, "You dont have lupus. I think you should see a psychiatrist..." Theres more to the story...but my point is EVERYTHING pointed to lupus for a long time...even organ involvement...but no doc would say yes without the ANA.
When I became really sick again this winter, I started seeing a new GP. After a couple of times seeing her (I kept getting pleurisy, swelling, swollen and painful jioints, and I literally COULD NOT stay awake) she said "This looks like lupus" I said "I always have a negative ANA" She said 95% have a pos. ANA, that means that 5% DONT" So, she prescribed me prednisone and plaquenil, two standard treatments, and I was IMMENSELY better within days (the prednisone is what worked right away, the plaqeinil takes a few months). She sent me to a rheumatologist as well. Now, I had seen him two year prior to this, and all my blood work was , of course, normal. I REALLY expected him to say he didnt know....Well, first off, he remembered me from years before, because he knew how sick I had been, and he felt bad that, at that time, he couldnt help me. He asked me what had been going on since. After we talked for a while, and I told him what was going on recently, he said, "Im glad SOMEONE knew enough to put you on plaquenil..." I was surprised he said that. He looked at my blood work from my GP, which by the way, is NOT normal. THough my ANA is negative, my other blood work definately shows an autoimmune process going on.
So, I played stupid, and said to him (knowing the answer, but SURE he wasnt going to say it), "Is there anything that can cause all these symptoms, but not show up in the blood?" He said, "There is a very rare form of lupus, where we see all of the symptoms, manifested over a period of years, but does not show up in the blood work. Its called seronegative lupus. But, it is very rare" I thought, OK - again - no Dx. He then said, "You seem to be the classic case of this. Your disease has come and go over the years, you have years of documented symptoms, but it hasnt shown in the blood yet. Chances are, at some point down the line, your ANA will become positive. But until then, we treat you and monitor your disease progression" I was estatic...FINALLY, a doctor conceded that this can happen. But, it took a long time for my blood work to show ANYTHING going on. I always was anemic, but it wasnt until the last year that my blood work showed consistently high sed rates and CRP (inflammation markers). Ive also had low c3 c4, low red cells and hemoglobin, abnormal white cell, really low lymphocytes, etc. My blood work is always showing inflammation. I think that made a big difference with regards to Dx too.
Anyway (sorry for the long story), it IS possible, but each doctor is different. Some will NEVER Dx without the ANA being pos. , others do. I finally, after years of being ill/debilitated - lucked out.
I am glad you feel better more often than not...I jsut want to see someone your age enjoy it...Good luck to you in your search, and stay persistent with your doctors....there is always an answer...