Not sure I have SLE
Howdy - I am trying to figure out what is or isn't going on with my health.
History: 9 years ago - after an accident that resulted in a basal skull fracture, the plate behind my sinuses being cracked and a brain injury - I ended up with a "malar type" of rash. It was a few months later that I first heard this term.
I have had the blood test 2x that I know of and both times it has been negative.
I also have other medical problems such as osteoarthritis, fibromyalgia and type 2 diabetes. I also have non-alcoholic fatty liver disease.
My rash has been DX as rosacea - but more red that most people. My skin is very dry and I no longer sweat where the rash is. It is also on my forehead and chin, but VERY butterflyish.
If you want to see what my face looks like:
I have days where I am exhausted and days where I feel better.
Mostly, I am looking for information and opinions. I saw a rhuemy once about my FM and OA and she just looked at me and said I didn't have SLE and that I needed to be more concerned about my weight and my FM.
Can you still have negative blood tests and have SLE?
TIA for any replies and input.
Hi Bunnyo :lol:
95-98% of persons with lupus have a positive test for ANA. Therefore, less than 5% of people can have a negative ANA test, and still have lupus. Therefore, persons having some symptoms and signs of lupus, but with a negative ANA test, should be very carefully evaluated for a large number of conditions that can have a positive ANA test. These conditions which can mimic lupus and have a positive ANA test include mixed connective tissue disease, undifferentiated connective tissue disease, scleroderma, myositis, rheumatoid arthritis and several others. Some times, it may take a while before a clear diagnosis can be made, because evolution of these diseases may take some time.
I would suggest that you insist on further testing for the possibility of these other diseases. However, it is not entirely impossible to have lupus with negative tests.!!
I hope that this helps
Peace and BLessings
Have you had the rash biopsied
The redness from rosacea can look a lot like a malar rash - sometimes even a dermatologist has trouble telling the difference. Although it isn't usually done as part of a lupus workup, it is possible to have a small area biopsied just to make sure it isn't lupus-related.
The fatigue from fibromyalgia can be extremely severe and hard to manage. if your doctor is sure you have fibro, it might be helpful to visit someone who specializes in treating fibromyalgia. Unfortunately, many doctors tend to underestimate the fatigue and disability associated with fibro, and don't offer much in the way of treatment.
Anemia is one cause of fatigue that is often overlooked in women. Women who are having monthly menstrual cycles can develop iron deficiency anemia from blood loss. This type of anemia can be diagnosed through a blood test. There are other forms of anemia that are caused by other medical conditions.
Chronic fatigue syndrome can also cause severe fatigue that doesn't improve even with rest. Chronic fatigue is basically a diagnosis of exclusion, once the doctor has ruled out other physical and emotional causes of fatigue.
Have you talked with your neurologist about your fatigue and other symptoms? A severe head trauma can cause effects that may last for years, including depression, fatigue, cognitive problems and recurrent headaches. With your medical history, it's important to work with a competent doctor to determine if any of your current symptoms are related to your past injuries.
I hope you are able to find some answers soon - I know it is frustrating when you know something is wrong but nobody seems to take you seriously.
Thanks Saysuzie - thanks for the welcome. I don't know if I do have SLE or rosacea - I am trying to do some research to attempt to figure it out.
I do have a brain injury as a result of my accident 9 years ago. My brain certainly didn't stay still in there and bounced around quite a bit. It is hard to tell where FM or ??? and brain injury start and end.
I do have FM. I also should mention that I have been hypothyroid since LONG before I bonked my head. The FM appeared sometime after my bonk - likely about the same time as the rash - I was concentrating on my bonked brain instead of focusing on other things.
I don't have a good derm around here - would be nice if I did... but...
I am looking to see a nateopath later this month - he is very good. I just hope I can afford any treatments. We have 100% drug coverage, but not for this type of coverage. Being a full time student is taking up most of my time.
One "symptom" I have noted is that some days I am just plain tired - even after a good sleep. I can't figure out a rhyme or a reason - my BG with my diabetes are usually well under control.
I know that weight loss is not something I have a problem with! LOL - I could stand to lose some weight. I have lost about 9 lbs in the past month which I attribute mostly to better control and diet.
I haven't seen a neurologist in YEARS now - my one "problem" was that I did NOT go into a coma - so many of the doctors I saw did the "hormonal emotional" woman routine.
Thanks for the feed back - I will keep up my research.
Shauna, are your thyroid levels checked regularly
Your dosage of thyroid hormone might need to be adjusted
Hi - good thought - but they are checked regularly - it was actually reduced a bit this past year from 0.15 ug to 0.125 ug. I have regular blood work checks.
One explanation for the "really tired" routine is the fibromyalgia. There is a theory that FM causes a disturbance in the deep phases of sleep. It might seem like you slept all night and that you shouldn't be tired, but it may not have been restful sleep. It sounds like your body has a lot going on and maybe some nights, it just can't totally "shut down" or it just doesn't get into the restful cycles that it needs. I totally understand. I recommend that you try to make sure that you plan your days so that you get "rest periods", not necessarily sleep, but times to rest so that you don't get way overtired.