First off I should note that I am currently a patient off in limboland with a strong possibility of a Lupus diagnosis. Before recent testing, I was awaiting an MS diagnosis given my genetic predisposition to it, but alas that it not the case. I have a very general understanding of Lupus thanks to research, but its minimal.
General Information: I am an 18 year old Caucasian female with no prior history of lupus in my family (but it should be noted that I have no information regarding my father's half of the family so it could exist there).
My mom has MS but I know that is irrelevant in the situation now.
Symptoms: Have had all of these symptoms varying in longevity from 6 months to a year (with a few noted exceptions). It should be noted that they all come and go spontaneously, but occur at least 3 times a week. Numbness/Weakness all over (primary in hands/feet), joint pain, cracking sound in joints, frequent urination, heavy chest/difficulty swallowing (occasional pain), frequent headaches & fatigue thats always present. Also, within the last 2 months I've been shedding hair like a dog (minor hair loss).
That is a general list of my ongoing symptoms.
Testing: I've had frequent MRIs of both my head and spine to rule out MS. A minor one was found in my head but has not changed any, and given my symptoms, not close to anything able to cause MS so it was ruled out. CT to check for chest issues - normal. Also, many blood tests have been done. Vit D and Iron deficiency found and corrected with no improvements in symptoms thus ruling those out.
Finally, one of the tests (that leads them to suspect lupus) was a positive ANA. It was 1:40 and spotted which is appearently low but indicates a possible case of Lupus since its a primary test. I am going in for further blood testing here this week. I will also be going in for an EEG in Mid September.
Also, a few questions I got right off the bat. I know the statistics but I wanna hear experience more here.
1) How often is lupus or associated elements fatal? How can this be prevented (if possible) ? Can I look forward to a possibly normal life?
2) How often does lupus cause a person to become wheelchair bound and how often does it cause cognitive impairment (if it does)? Details?
3) How is lupus confirmed? Tests involved? Treatments (I know its not curable)?
My apologies for the massive post. But I got some great info from people in the MS board earlier, and I'm hoping to find the same thing here to ease my mind. Again, any input is appreciated. If it were MS, I'd know things. But with Lupus, I really am clueless in general so anything will help.
Last edited by ArcticWolf; 09-01-2012 at 08:35 PM.
Welcome to the lupus board, and I hope I can answer some of your questions. I have had it for 28 years. Treatment for lupus has come a long way, so survival rates are very good, and it is possible to live a nearly normal life with normal life span depending on how severe your case is and what organs are affected. Most people resond well to treatment and have less fatigue, joint pain, etc. than without treatment. There are many "supporting" lab abnormalities and a long list of symptoms. A diagnosis requires at least 4 out of 11 criteria identified by the American College of Rheumatolgy. A big factor in prognosis is whether kidneys are affected. Cognitive dysfunction is very common, and it tends, like the other symptoms, to wax and wane over time. One cannot prevent lupus, but can prevent some of the long term complications of it. It is important for each person to know their usual constellation of symptoms, and to modify their lifestyle to pace themselves, get enough rest, avoid sun as much as possible, and protect their joints, and cardiovascular system. Essential is to get connected with a good rheumatologist for frequent monitoring and care. A support group is very helpful, and a good book is The Lupus Book by Daniel Wallace, MD. The arthritis of lupus is painful but not deforming, like RA can be, so becoming W/C bound is very rare. It is very important to control risk factors for high blood pressure and heart disease, as well as respiratory disease. So no smoking, eating well, keeping cholesterol down, keeping weight down (helps the weight bearing joints in addition to general health benefits.) Be sure to ask your Dr to check your homocysteine levels and anti-phospholipid antibody levels, as those 2 things, if high, can predispose to blood clots. They are high in about 30% of lupus patients. Autoimmune disorders in general can run in families, but not everyone will have the same AI disease, ie. your Mom with MS. Many states have a Lupus Foundation that offers assistance, classes, support groups, etc, and I would recommend you check for one in your state. They often have a newsletter and a wealth of info in pamphlets, etc. I wish you luck with an easy course and a good compassionate Dr.
Hi, Arctic Wolf, and welcome. Have you seen those "sticky posts" (permanent info posts) at the top of the thread list? They contain basic info on lupus, also on antiphospholipid syndrome, a clotting disorder often seen in lupus patients. They're an excellent place to start because the info is basic, and then you can build on it as you read more.
Those diagnostic criteria provide some insight into what tests are usually run to begin to determine if you have lupus. Yes, ANA is the most basic of the specialized tests. However, it alone isn't diagnostic b/c it's positive in a number of diseases, not just in lupus. (For example, ANA is also positive in Sjogren's syndrome, rheumatoid arthritis, polymyositis, scleroderma, Hashimoto's thyroiditis, pernicious anemia, pulmonary fibrosis, mixed connective tissue disease, *ETC*. There are many!) So the ACR ended up with 11 criteria, and people with lupus vary widely in which ones they meet.
ANA can also elevate only due to a passing virus or to a family tendency. Finally, as you said, I think 1:40 is barely elevated.
I imagine the rhematologist will re-do all your basic bloodwork (CBC and blood chemistry panels), also urinalysis. And I imagine he'll also run tests for *more specific* autoantibodies, such as anti-ds-DNA, anti-Sm, anti-Ro, anti-La, antiphospholipid, anti-RNP, antiribosomal P, antneuronal, *ETC*. But weirdly, when you read the criteria, you'll see only several of these "make" the list: that's because only those several are considered VERY strongly specific to lupus, while the others are seen in lupus AND in other conditions.
And I hope he also checks out your thyroid levels. Hypothyroidism can cause some of the symptoms you cited, incl. hair loss, brain fog, fatigue, and breathing problems. Those tests are typically "extras" that must separately ordered as add-ons. (My sis was dx'ed with Hashimoto's and I was dx'ed with lupus; and we did share some overlapping sysmptoms.)
BTW, a small percent of lupus patients stay ANA-negative, in a subset called Ro-lupus. These people have negative ANA but positive anti-Ro. But this is rare, maybe only 3-5% of all SLE patients.
FYI, just for comparison purposes, from childhood my problems included weight & hair loss, joint pain & pain along long bones of arms/legs, pneumonia, encephalitis, depressed WBC, very low B-12 & Folate, elevated sed rate, low-grade fevers, various forms of recurrent skin rashes (one finally biopsied as lupus-specific), migraines, 20+ years of GI misery, and 10 years of urinary frequency/urgency. Oh, and tingling. Interesting, my drs. said my tingling was fomented by the low B-12. Despite all those years of problems, I'm considered subacute, meaning no chronic "major organ" problems (heart, lungs, kidney & brain). I've improved a lot with Plaquenil & sun avoidance.
But if this does turn out to be lupus? Well, I too want to assure you that many people manage pretty well, with proper treatment and followups. I hope you keep us posted on how your upcoming tests turn out, and that you post any time you have more questions or just feel like talking. There are nice people here to keep you company as you go forward, so I'm glad you found us! Bye for now, with my best wishes to you, Vee