View Full Version : I am going crazy. . .
05-29-2009, 11:44 PM
I have been pouring over my lab work and looking up stuff online (probably not a great idea) trying to put pieces of this puzzle together.
I posted previously about how I was confused of the lab results I got from my doctor Wednesday. He has diagnosed me with Lupus, I am going for a 2nd opinion Monday.
Can someone look at my results and let me know what you think? I'm really losing my mind here.
Here are the results:
Anti-Nuclear A Screen-Positive
ANA Titer: Negative (<1:40)
ANA Pattern: Negative
*Although the specimen was negative for anti uclear antibodies (ana), the presence of cytoplasmic fluorescence was noted on the hep-2000 slide. Other reactivities (e.g., anti mitochondrial antibodies or anti smooth muscle antibodies) may be responsible for this fluorescence.
Anti DNA DS AB-13, Positive (< or = 4 is negative, 5-9 is indeterminate, > or = 10 is positive)
All this being said, I know that Lupus depends on several other factors to diagnose. My main symptoms that got me to the doctor was numbness in my right leg and foot. I also had round spots that grew on my feet. I get a butterfly rash on my cheeks when I'm in the sun for more than a few minutes or when I go from a hot to cold environment or vice versa. During the summer, the rash is there constantly. Same thing with the spots on my feet. I get migraines, treated with Topamax. Even with that, I get headaches that aren't quite migraines, but are worse than normal headaches.
I explained away all these symptoms for years as other things. The numbness has gotten bad and is starting in my left leg. I just can't ignore it.
Really, I can't apologize enough for bugging you all. Honestly, I really just want to accept this and move on. I just feel like it's all so borderline. I read that it takes a long time to diagnose Lupus normally. How is it that I was diagnosed so quickly? Why would a doctor diagnose me so quickly unless he is absolutely certain?
All these are questions going through my head keeping me from sleeping. Really, I'm losing it. :wacko:
05-30-2009, 01:09 AM
Dont apologise, im feeling much the same at the moment....just confused...
I was diagnosed after 1 lot of blood tests and 5 minutes into my first appt with my rheumatologist a week ago.
Im sorry, im in the same boat as you at the moment so i dont have any answers for you hun...hopefully someone else can help...
05-30-2009, 05:44 AM
I was like you, in way. I had various symptoms that could be explained away for oh, about 23 years...they'd come...they'd go.
Fatigue, blame it on a rough work week. Diet....
Face rash...blamed it on allergic reaction to cosmetics.
Joint pain...blamed it on arthritis...
Costochondritis....just a happens...
Nose Ulcers...oh, stress...
Hair loss...yearly shed.
One day they never left...ran the tests in one day...few days later. Lupus. So, was it a one day or was it a 23 years diagnose for me...
I use to ask, when the test were borderline, then I thought well no one is borderline pregnant when positive...
Because Lupus symptoms don't happen all at once..it is an accumulative disease. What was in you history, of symptoms?
Only your doctor can answer why he came to that diagnose...clinical findings, your lab test, medical history....
ACR criteria, just from your post..you met 4 of the criteria which is all that is required for a diagnose.
1. Butterfly rash
2. Sun sensitivity
3. Positive ANA
4. Positive ant-DNA
I am not saying you have Lupus...just showing you how he may have come to such a diagnose.
Happy Saturday...enjoy the day..take a break from your diagnose and start again on Monday..
05-30-2009, 07:13 AM
don't every feel like you have to apologize to this group....each one of us has needed extra support from our little world-wide family, and we each know how you are feeling.
I know you are stressing over information overload. Please believe me when i say things will settle down and you will find a way to continue with life.
Lab results change with the occurrence of a flare or even between labs. This is why the dr. will use other criteria along with the lab results for a diagnosis.
Try to stay calm and let time work for you.
05-30-2009, 11:00 AM
You've been given information about the criteria for a Lupus diagnoses. As I've mentioned before, doctors will not make a positive diagnosis easily for many reasons. One reason is that Lupus is one of about 80 auto-immune disorders whose symptoms all resemble each other. The diagnositc procedure is more like a process of elimination. They eliminate each of the possible diseases one by one. Also, these diseases are notorious for changing, for slowly developing symptoms, or for old symptoms to disappear only to be replaced by new ones. This is why it can sometimes take up to a year before we get a definitive diagnosis.
Anti-Nuclear A Screen-Positive
Now, a positive ANA can be found in Lupus, but other illnesses also have a positive ANA. The ANA test is ordered to help screen for autoimmune disorders. While it is most often used as one of the tests to help diagnose systemic lupus, it cannot be used to definitely diagnose or eliminate Lupus. It is one of several tests that can indicate some type of auto-immune disorder.
ANA Titer: Negative (<1:40)
To perform the ANA (antinuclear antibody) test, a blood sample is drawn from and sent to the lab for testing. Serum from the blood specimen is added to microscope slides which have commerically prepared cells on the slide surface. If the serum contains antinuclear antibodies (ANA), they bind to the cells (specifically the nuclei of the cells) on the slide.
A second antibody, commercially tagged with a fluorescent dye, is added to the mix of serum and the commercially prepared cells on the slide. The second (fluorescent) antibody attaches to the serum antibodies and cells which have bound together. When viewed under an ultraviolet microscope, antinuclear antibodies appear as fluorescent cells.
If fluorescent cells are observed, the ANA (antinuclear antibody) test is considered positive.
If fluorescent cells are not observed, the ANA (antinuclear antibody) test is considered negative.
A titer is determined by repeating the positive test with serial dilutions until the test yields a negative result. The last dilution which yields a positive result (flourescence) is the titer which gets reported.
ANA Pattern: Negative
*Although the specimen was negative for anti nuclear antibodies (ana), the presence of cytoplasmic fluorescence was noted on the hep-2000 slide. Other reactivities (e.g., anti mitochondrial antibodies or anti smooth muscle antibodies) may be responsible for this fluorescence.
An ANA report has three parts: 1) positive or negative 2) if positive, a titer is determined and reported 3) the pattern of flourescence is reported. ANA titers and patterns can vary between laboratory testing sites, perhaps because of variation in methodology used. However, these are the commonly recognized patterns:
* Homogeneous - total nuclear fluorescence due to antibody directed against nucleoprotein. Common in SLE (lupus).
* Peripheral - fluorescence occurs at edges of nucleus in a shaggy appearance. Anti-DNA antibodies cause this pattern. Also common in SLE (lupus).
* Speckled - results from antibody directed against different nuclear antigens.
* Nucleolar - results from antibody directed against a specific RNA configuration of the nucleolus or antibody specific for proteins necessary for maturation of nucleolar RNA. Seen in patients with systemic sclerosis.
Now, in the absence of a positive ANA pattern and titer, it happens often that the patient will have anti mitochondrial antibodies or anti smooth muscle antibodies, which is indicative of an auto-immune disease and possibly of Lupus.
It does not happen often that a person has a low titer positive ANA, but it does occur and should not be ignored by doctors. Unfortunately some of the people with low titer positive ANAs do have diseases! The problem with diagnosing these diseases is that doctors MUST consider the following: Positive predictive value – how likely is it that a positive test means you do have the disease. Negative predictive value – how likely is it a negative test means you don’t have disease! Neither one can be taken as gospel. Further tests must be done!
The results depend entirely on the person being tested. If doctors are testing someone with symptoms whom they suspect have a disease, they will get entirely different results than if they randomly test people on the street with no reason to suspect they have disease. Thus the sensitivity, specificity, etc all depend on the clinical situation of the person being tested.
The general guidelines that should be used are 1) If the patient has symptoms of a rheumatic/atuo-immune disease, they should be evaluated no matter what the ANA result.
2) If the patient has an ANA of 1:40 or less, it cannot be assumed that this means nothing. If the ANA is 1:80 you are in ‘no man’s land.’ (it could mean any number of things!); If the ANA is 1:160 or higher, a rheumatologist should take a closer look and do further testing.
I hope that I've answered some of your questions and that I did not confuse you further. Please let me know if you need anything further!
Peace and Blessings
05-30-2009, 11:53 AM
I wanted to thank you for this information. I'm going to the dr again on Monday for a kinda check up, I'm really asking for a cheaper medication, but when I was first diagnosed I was young (18) and confused by it all. I never asked for my lab results, and I believe I'm going to ask to look at them just for curiosity sake on Monday. I want to see how mine match up to this information you've so graciously given us.
05-30-2009, 12:01 PM
Thank you so much for the info! Totally makes more sense!
The ANA is really what has got me so tied up. The rheum. keeps saying that he is mainly basing my diagnosis on my dsDNA and my symptoms. Everytime I ask he says that the dsDNA is a "highly specific test for Lupus" and if the dsDNA comes back positive with all the symptoms I have, then it is Lupus. He said it was caught early, but it could turn serious at any time. That's worrying me, too.
As I said, my main concern is that I'm preparing myself to come to terms with this, begin treatment and most importantly settle on the fact that this is what is causing my symptoms. If it is not correct, I will be back at the beginning and will feel like I've lost time and taken meds that were not needed. Does that all make sense?
I think I need a day at the spa. . .
05-30-2009, 12:24 PM
Sorry you are going through such a tumultuous time. It is never easy going through the diagnoses and treatment phase of any illness especially lupus.
IMHO it is good to research. I wish I had Internet back in the day, it would have saved me much confusion. Susie would have been a Godsend!
Do try to relax, stress is not good for anything auto-immune related.
We're here for you.
04-15-2013, 11:30 AM
Have you been tested for antiphospholipid syndrome? "APS for short" I started out with numbeness and tingling in arms feet and legs as well as headaches and eye pain and dizzy spells. For sometime upon waking up in the morning i could not feel from my waist down. APS can do all those things. It is a blood clotting disorder and is considered an autoimmune disease. But the fact that you have a positive ds-dna it is specific for lupus. I too have lupus along with the malar rash and such. But lupus also puts you at an increased chance of having other autoimmune diseases such as APS that can causes the migraines and numbness and tingling. If you havent allready been tested Ild demand the doctor to test you for the APS. Just a suggestion as I can relate to your symptoms. I wish the best for you but dont wait too long. Autoimmune diseases like lupus if not managed can lead to bigger problems.