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Posted 8/19/2013 1:55 AM (GMT 0)
Hello, I'm a 33 year old woman who has been ill on and off for 6 years. I've had issues with fatigue, memory issues, muscles weakness and joint pain in my hands. It's progressively been getting worse. I recent have developed blood in my urine and an increase in petechiae. It's gets to the point where it majorly affects my normal life. With these new symptoms I've become very afraid. My blood work comes back normal though its been a couple of years since I've done am ANA test. I also have pain when people apply any pressure to my neck and shoulder areas. When I eat I get very tired and my stomach swells like I'm a bit pregnant. I've been to a hematologist, 2 different rheumatologist, and changed primary doctors twice. I've had an endoscopy, a renal ultrasound, and EKGs. If I didn't work I would easily nap for two hours every day. I had a sleep study done and they sound I have hypersomnia but thru don't know why so I take meds to stay awake but they don't really help. I was diagnosed with fibromyalgia 3 years ago but I think that it's something else since I'm still getting worse with more symptoms being added. More now than ever before. I was told recently by an ER do cypr up go to UPENN but I don't know where to start. Oh I also can't be in direct sunlight for more than 10 minutes without feeling completely wiped. If anyone has any ideas of what tests I should request or where I should turn I would greatly appreciate the help. Thank you.
Posted 8/19/2013 3:35 AM (GMT 0)
Have you had a full workup by a rheumotologist?
Posted 8/19/2013 4:29 PM (GMT 0)
Yes I believe so. I saw one about 5 years ago and then tried another 3 years ago. I somehow was able to get an appointment tomorrow at UPENN with a rheumatologist that specifically handles lupus. Is it possible to have lupus if your bloodwork comes out normal? I had an MPV of 11.4 but that was the only thing that was elevated in my blood count. My white blood cell count was 206. are my symptoms similar to people that are diagnosed with lupus?
Posted 8/19/2013 5:52 PM (GMT 0)
Check out the link "diagnosing lupus" in my signature. There are 11 symptoms to lupus, you need 4 of them for a diagnosis. Yes, you can have lupus with a normal blood workup.

Also check out "lupus resources" - some members have contributed to a list of things to take with you & do in preparing to see a rheumy.

Best wishes,
Posted 8/23/2013 3:40 AM (GMT 0)
I am wondering if SLE can return after a 5 year remission but have a few different s/s? I used to have very sick all over feelings, was in bed exhausted and weak, with UTI's, migraines, depression, extreme fatigue. But now after a long remission I have been getting all of those to a LESSER degree plus sleep issues, heart palps, nausea, vision probs, constipation, memory lapses. Do any of you think I have a return of Lupus? (Or could it be Lyme, Sleep Apnea or Hyperthyr.)
Posted 8/23/2013 3:48 AM (GMT 0)
I think you're considering all the right things...Lupus, Lyme, Sleep Apnea and/or Hyperthyroid, etc.

Have you been treating the Lupus at all in the last 5 years? I wouldn't be surprised if it comes back with different symptoms. Trot on back to your rheumy!

My rheumy is very clear on his terms, he says Lupus can be "quiet" but just by the nature of the disease it is never in "remission". That seems to be a common way to look at it by all rheumys here (major metropolitan area).

Let us know!
Posted 8/23/2013 6:32 PM (GMT 0)
I have not seen the Rheumatologist in over a year. And when I did see him it was because of Fibro. flare ups, but he did do tests to see if the SLE was back and it was not. But now I am going to see him this coming week because I am sick of being sick so much. And I am also going to have another sleep study in a few weeks to see why I keep getting heart palps. when I am waking up and falling asleep. (The nurse told me my "pulse ox" was low so that m/b something)

So I am trying to get some answers, I thought this all was because of a sudden death in our immediate family, but I think some of the medical problems need to be checked out better. I will let you know!
Posted 8/24/2013 12:04 AM (GMT 0)
Hi there, sorry to hear that you're having a flare up of symptoms. Are you on anything to treat your lupus? I'm sorry to hear that you had a family member pass away. Stress is one of the big things that can set lupus off into a flare.

To answer your question about having lupus and having negative blood work, yes it can happen. I happen to be one of those folks. Sometimes, my ANA and double stranded DNA is positive, but in most cases, it's negative. My C3, C4, and Sed rate are normally negative too. However, my CRP is always positive it varies depending on how I'm doing though. When my flare is really bad my numbers can be as high a 3 times than it should be.

Many lupus patients can have their lupus go quiet and do w/o medication for extended periods of time. Others, like me, flare all the time. I can't tell you when I last had a good day. I've got so many things going on with my RA and Fibro in addition to the lupus and now LGL leukemia I can't tell sometimes which problem is causing me issues.

I hope that your Rheumy can provide you with some answers and I wish you well with your sleep study. I have both central sleep apnea and obstructive sleep apnea. With sleep apnea you stop breathing while you are sleeping, which will pull your pulse ox down. I know mine drops all the way down into the low 80's.

Wishing you the best and I hope that you start feeling well soon. Take care and let us know what the Dr has to say.

Hugs,
Barbara
Posted 8/25/2013 2:47 AM (GMT 0)
Barbara, Do you still have Lupus because of the CRP being positive? Mine was always considered active because of a very high ANA titer 1:1280 or 1:2560 but other tests were rarely positive. And when the ANA was finally at normal-after 15+ years then I was in remission but still feel sick so often and am not taking any meds. I don't know how I can feel so crappy even though there is no Lupus-maybe it is something else. So I will let you all know about the Rheum. visit and the sleep study(I had one a few months ago but could not fall asleep, I am hoping that for this second study they can give me meds that are strong enough to knock me out). P.S. How did you find out about your Sleep Apnea and is it related to your Lupus? Thx. Sue

Dx:sle in remission, fibro, depression, IBS, migraines w/nausea & vision pr., osteoarth.,exhaustion at times, sleep issues, heart palps
Posted 8/25/2013 3:03 PM (GMT 0)
I'm sorry, but if you still have symptoms listed above, why do they think you are in remission? Lupus is defined by having 4 of 11 symptoms and it looks to me like you still have them. (See diagnosing lupus link below.) Lupu s*is not* diagnosed by ANA alone!

You probably should be taking plaquenil if nothing else.
Posted 8/25/2013 7:10 PM (GMT 0)
The ANA was at a normal range and no other tests were positive so the Dr. said my symptoms were due
to Fibromyalgia. I have a hard time believing that and maybe I still have Lupus but have no Lab evidence.
Posted 8/25/2013 7:18 PM (GMT 0)
When I go to the Rheumatologist this week I will ask him about the possibility of negative test results but active disease! If that is possible then I might not have been in remission for this long.
Posted 8/25/2013 7:24 PM (GMT 0)
I'd find a new rhuemy if I was you.
He sounds like he only depends on test results and nothing else.

My rhuemy says once you have lupus you always have lupus and the levels will rise and fall.
Posted 8/28/2013 11:56 AM (GMT 0)
Got my Ana done. It was at 140 with initial positive but negative after I dilute. So it's negative. But I got a cystoscope done this week and I have several areas of chronic inflammation of my bladder. They don't know why. I had an endoscopy done 3 years ago and they saw inflammation there but didn't know why. Chronic fatigue. Petechiae, easy bruising, stomach swells when I eat, blood in urine, hair loss, my hands hurt often in the joints, muscles are stuff and ache, muscle weakness, dizzy spells. I was diagnosed with fibro 5 years ago but my gut lately has been telling me it's something else. All for the past 4 months I keep getting more symptoms and getting worse. Any thoughts? My labs keep coming back normal for the most part.
Posted 8/28/2013 9:02 PM (GMT 0)
Rorypond, I would talk with another rhuemy.
Posted 8/31/2013 2:02 AM (GMT 0)
Finally got to my Rheumatologist and gave him my long list of symptoms. He was great at listening and checked me over and ordered LOTS of blood and urine tests. So glad I might get some answers, but
it might take 10 days or more...(Doctor is checking for return of SLE, poss.Lyme, Thyroid Prob., Anemia, Liver Prob., Sjogren Syndrome and whatever!) Will let you know.

Sueg----Fibro., Migraines w/ nausea & vision pr., UTIs, Depression, Sleep issues, Extreme fatigue, Aches & Pains, Memory pr., Dry mouth & eyes, PVCs, IBS, SLE in remission
Posted 9/8/2013 3:56 AM (GMT 0)
Rorypond, I read your last post and you sound so much like me. I have so many symptoms but I went to the Rheumatologist and all the many tests that he did came back negative. I thought for sure something was wrong, but maybe the doc made a mistake! I don't want any disease but I want some answers instead of the lame excuse called Fibromyalgia. I'm just on a rant! Sueg
Posted 9/13/2013 7:55 PM (GMT 0)
I have some pretty nasty food allergies, and sometimes after eating I have swelling of the stomach (then the intestines, colon for the next 3 or 4 days).

If I feel tired right after eating, then I check my blood pressure and look more closely at my symptoms (hives, tongue or face swelling, breathing difficulties) in case I am going into Anaphylaxis and need my Epi-Pen instead of a nap.

This lupus-thing seems like it is a wiley creature, sneaky and full of tricks when you least expect a flare, and it can certainly cause a lot of difficulties, but I also have learned the hard way that allergies are something to be considered when I'm not feeling well.

Once for a few days, all I ate was low-salt wheat crackers and a little tomato juice, what a drag that was for a BBQ-loving Texan. For once in my life I felt compassion for the guys on the USS Saratoga who screwed up so bad they were put on bread and water for three days down in the Brig.

I honestly can't say whether it would be better for you if it is an allergy instead of something to do with Lupus, but I do hope you get well and whatever it is just goes away and leaves you alone.
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