Hi guys--I have had the following which started 3 months ago
Migratory joint/bone pain-shoots from one area to the next
Buzzing feeling in feet
Extreme joint cracking
I now have muscle twitches all over my body.
I have had a ton of blood work done and a bone scan-all clear.
Does lupus always show up in the blood?
Do these symptoms sound like lupus or familiar to anyone?
Hi. When people ask this, I try to chip in because I fell thru diagnostic cracks & know how that feels. (I'll say why later.)
One of the 3 "sticky posts" at the top of the thread list ( = permanent info posts) lays out 11 criteria for systemic lupus (SLE). Strictly speaking, these *classify* SLE but are very often used to Dx it. Mostly you meet at least 4 of the 11 at some time (not necessarily all at once) to support a Dx of SLE.
You'll see that only *some* are blood results, while others are symptoms, skin rashes, etc.
The hallmark of SLE is autoantibodies (mistakenly created) that attack healthy cells. Only two are considered definitive enough to make the list: anti-ds-DNA & anti-Sm. However, in his hardcover, Dr. Daniel Wallace lists 14OTHERS (like anti-Ro, anti-La, antiphospholipid, antiribosomal P, rheumatoid factor, etc.) that can be seen in lupus also. i.e., thorough blood tests would include ANA plus these others. FYI, these tests are "add-ons", meaning are in addition to standard bloodwork.
Pitfalls of bloodwork: Some tests take years to turn positive. Some results rise & fall with flares. Many overlap with other "close cousin" diseases. Even the cornerstone ANA is tricky, as it can be positive in quite a few other conditions & also just due to a passing virus or to a family tendency. Also, a very small % (3% or less) of patients have SLE without a positive ANA, typically with positive anti-Ro; this is obviously rare. (That's where I landed.)
Other forms of lupus: there are lesser variants featuring other lupus rashes & meeting fewer criteria. One kind, often remaining intermediate, is SCLE (subacute cutaneous). Another, viewed as almost always mild, is DLE (discoid). Then there's DILE, = drug-induced, which almost always resolves when the offending drug(s) is (are) withdrawn.
Have you asked for copies of your bloodwork? Drs. may say things are fine only because they're still mullling things over. My doctors never told me my B-12 & Folate were sliding downhill; I learned much later this can suggest the anemia of chronic inflammatory disease.
In your shoes, I'd start there: get copies of your labs & see how extensively you've been tested. And after you've studied the "stickes", if lupus still looks anywhere in the ballpark, you could hit your local library & look for reputable hardcovers: one by Dr. Daniel Wallace & others by Dr. Robert Lahita.
Lastly, if you've seen only GP's, maybe you could do better with a specialist. Given joint pain, in your shoes I'd probably start with a rheumatologist. (FYI, there are over 100 kinds of arthritis, I've read; wild, huh?) Or a neurologist, given your unexplained tingling. Anyway, I hope you post more when you can. Hang in there! Sincerely, Vee
I was one of the few who had a negative ANA but a positive Anti-DNA and a ton of Lupus Symptoms. I was diagnosed after a rash covered my body, swollen painfull joints and extreme fatigue hit me the day before Christmas. The Dr. ran the ANA and the add ons like the Anti-DNA and he sent me to a Rheumy. She diagnosed me in April this year. Finding a good Rheumy is the trick to getting the right care.
Thanks guys. I am just at such a loss as to what is causing my pains, cracking and now muscle twitches. I went to two rhuemy one looked at me did a quick neuro test and said I was young, looked good so I was fine. The other said it was a virus and the med he had would take 3 months to work and that I could have the virus gone by then or the virus could last yrs. Whatever with that one.
So am I understanding that if I get an ana, sed rate etc it could still all come back negative?
Yes, it could come back negative...It could come back positive. If it is not a virus and symptoms continue be persistant. Eventually other symptoms may pop up as well which will help with a diagnosis. It is frustrating, it takes a lot of time, and a lot of money. It might even take a lot of different doctors. The important thing is to listen to your body and don't give up and get help! If your blood ANA test comes back positive, get a copy of it and keep it! My blood tests were negative, then positive, then negative again. I was still diagnosed with lupus because of my symptoms and positive ana test and scleroderma because of spots on my hands. Only you know how you feel, so be persistant and hang in there!
It took the doctors years to find out that I had lupus.
[QUOTE=k2626;3728400]Thanks guys. I am just at such a loss as to what is causing my pains, cracking and now muscle twitches. I went to two rhuemy one looked at me did a quick neuro test and said I was young, looked good so I was fine. The other said it was a virus and the med he had would take 3 months to work and that I could have the virus gone by then or the virus could last yrs. Whatever with that one.
So am I understanding that if I get an ana, sed rate etc it could still all come back negative?[/QUOTE]
Hi there K2626, a couple of months ago I saw my rheumy for the second time, and he too told me he thinks I have a virus. I started feeling very achy all over my body, headaches, and very tired, just not feeling normal at all. I had a positive ANA 1:32 Homogeneous pattern, inconclusive ANTI-DN-DNA, sed rates were normal, uric acid was normal too and all other lab work he ordered was normal. I get face rashes a couple of times a year, but since I didn't have a face rash at the time, he can't tell wether it would be lupus related. He also said that 20% of the population has a positive ANA which doesn't mean they have a auto immune disease. He strongly believes i have a virus, which he stated could take months to go away. I've never heard of that but I figure he knows, hes the doctor. Anyways I felt so dissapointed, it just made me feel like whats the point of wasting my time going to see him, since he figures nothing is really wrong with me. He did asked me to call his office if I ever got another face rash. At this point i'm just trying to ignore some of my symtoms but when I read your post i felt like someone else has the same symptoms i have.
Well take care, hope you get a dx. :)
Thanks T--sorry you are going through this too. What exactly are your symtpoms and how long have you had them. All my labs have been cleared
Hi K, I feel like I have the flu, body aches, headaches, sometimes only certain parts of my body hurt, like my left leg hurts alot sometimes, my arms, my neck. This started around April this year, but when I think about it i think it could of started before, I would just think that i was tired of doing too much. But when I started seeing the rheumy I started remembering that when i was young, I'm 38 now, i used to get the face rashes, I did see a dermatoligist which dx me with having lupus of the skin, that was in 1993, he told me that it was not the "bad" lupus, back then I had never heard of lupus, he treated me and I got better but thru out the years I kept getting face rashes, but I kind learned how to live with them, and then they eventually would go away. Until this year that I started feeling very abnormal, thats the only way I can describe it, but this rheumy basically told me I don't have enough symptoms to give a dx. I still dont feel fine, but I recently started working out, hoping not think so much about my aches and pains. I have read Dr. Wallace book, and Dr. Lahitas one too, and apparently it could take years to get dx if you have lupus, not a very reassuring statement when your looking for answers. What other symptoms do u have?
My symptoms are more painful.. I get stabbing pains all over my body. When it first happened I thought I sprained my ankle. The pains can last one second or hours and they move around everywhere. At the same time I started to notice extreme joint cracking. Now I get little muscle twitches all over my entire body which makes me VERY scared of ALS. Of course I have dx myself with 40 things since this hit. The little twitches scare me the most. Also, I got beaus lines on my nails two months ago which supposadly is a sign of a serious illness or "major metabolic disorder". However, all tests so far clear.
I too have been tired...exhuasted really. Part I am sure is from the stress of all of this.
What other tests have you had?
Hi K, I've had c4, c3, cmp panel, tsh, ana, anti-dn-dna, uric acid, and all your basic normal lab work. Everything came back normal, except the ANA, and anti-dn-dna, but of course that is not enough to get dx. How about you, what lab work have u have done?
Ana sed lupus test, all fine. Not sure though if this is what I have but think it could be one of the possiblities.
K, I hope u find out whats wrong with u, and hope everything goes well.
Do my symptoms sound like lupus? The joint cracking is insane, and now the constant twitching is driving me up the wall. I try to ignore the pains but I just want to know what is wrong with me...