Why are my lupus tests negative?

Tippi, I understand and agree with you 100% on your theories. Doctors rely too much on blood work for a diagnosis. Keep us posted if you will and I will update as well. Perhaps by learning from each other we can narrow our suspicions down. (I do a lot of research on the internet). It appears you have the right attitude and good sense regarding your challenges. Hang in there, someday we might find out what is going on with our bodies and find some relief. If even the diagnosis is not great, it’s better than not knowing and being swept under the rug.

Ladies, you might also like to try Mega B. This helps the nervous system and reduces horrible symptoms such as buzzing, paraesthesia (partial numbness), spinal chills etc. It is also calming to the nerves.

My father was in Japan with the Peacekeeping Forces for 3 years at the end of WWII (radiation). My mother has a family history of neurological diseases, especially Parkinson's Disease.

Two out of 3 of my sons and I have problems which I'm sure originated from excessive use of computers (fibromyalgia, epilepsy, erratic cranial nerve impulses). The last of these can have strange effects on your nose, ears, eyes, spine and also cause buzzing and paraesthesia.

I have had a rash on the backs of my lower legs caused by heat rather than sun. Treatment with NSAIDs for arthritis put an end to the problem, which tells us it's part of an inflammatory disease.

I would suggest testing for food and environmental allergens, and attendance at a naturopath's office for diagnosis and advice. A friend also thinks a chiropractor could realign joints, and that might fix strange sensations and abnormal reflexes.

Thanks Lorikeet for your help! I will certainly try the Mega B and your other suggestions.

Here is my theory on blanching, redness and pain. When muscles, tendons and ligaments are being used, the nervous system fails to signal the need for more blood to be sent. The hands (for example) turn white and cold because they are being injured due to lack adequate blood supply. Later on they react to the injury caused, and this time the nervous system sends signals which result in excessive blood being delivered to the area. This makes the hands red and swollen and the veins on the back of the hands become distended due to engorgement. I never experienced this problem until I was exposed to heavy computer use 8 hours a day, 5 days a week. Since my husband had a number of qualifications in the electronics field, he said I was being constantly bombarded by 5 different types of radiation. The office environment was small, but contained lots of computer terminals, 2 large printers, 3 electronic typewriters, 2 telex machines and lots of fluorescent lights. I have one sister with Fibromyalgia and one with Lupus. All of us have worked in similar office environments. I also have a son with Fibromyalgia. I was recently diagnosed with an Auditory Neuroma which I think may again be due to exposure from radiation, especially a cordless phone used at home. It is deep in the canal of my left ear, and I am left handed. My mother had a meningioma removed from her brain at around age 67. I am only 57, but my mother had very little exposure to radiation by comparison.

I am also one of those people who have many symptoms characteristic of autoimmune disease but have not tested positive on the labs. One physician specialist did go ahead and put me on plaquinil and the symptoms lessoned and flares with less frequently. I did go to Mayo clinic and one of my tests was a slight positive. I went there becasue I developed new symptoms on top of the others ones, which was a chronically burning mouth to the point that it was debilitiating and I could not concentrate on anything much at all becasue of the pain. In addition I also have dry eyes which are treated with restasis, lacrimil plugs and just recently started a medication which causes increased saliva production which is helping. I also take a weekly regiman of diflucan for the symptoms which have improved greatly but never gone away completed. The way Mayo explained it to me was that I was a pre-autoimmune disease condition and that they do not always progress into full blown able to diagnose and this is actually good. But at the same time you still need treatment to lessen the symptoms and hopefully prolong or eliminate the risk of actually going into a full blown autoimmune disease. I was given a diagnosis of undifferentiated autoimmune disease of the connective tissues along with symptoms of sjojorn and the burning mounth syndrome. I was just recently placed on one of the new medications used to help suppress the symptoms which I am trying since I was developing flares again. I hope this is helpful. It is very hard to have all these symptoms and no definitive diagnosis and finding a doctor who is on board and knows their stuff is hard. I have had this since 1995 and other than my trip to Mayo in 2005 I just now found a new rhuematologist who is wonderful, young and caring.

Hmmm....interesting. I have often thought that my symptoms were pre- autoimmune because of my “normal” blood work. I have, however, tested positive with multiple high markers for lupus and vascular disease when in my worst flare, this flare was so severe I couldn’t walk, comb my hair, or brush my teeth without assistance. The only thing that helped was high doses of Prednisone. Again, within this flare my blood work (ESR, ANCA, ANA, and ANA pattern homogeneous 1:1280) was positive or High (whatever that all means). This tells me that my "mini" flares are not showing up on my blood work. Even though my symptoms change and move around, there is no mistake what it is, small flare or BIG. I recognize it the moment a flare begins because the common denominator symptoms are so distinct. In a much earlier post, someone asked if I had been tested for MS. I went to a Neurologist yesterday and have a MRI scheduled this afternoon. I’ve been given Lyrica by my rheumatoid specialist and it helps with the vibration in my face and legs. Lastly, I want to emphasize my autoimmune problems all began with a monster virus I caught in the office 10 yrs ago. It was the sickest I’ve ever been from a virus, high fever and convulsions, it lasted for months and mimicked a mono virus. I think it was an Epstein Barr virus on steroids. I know my body and I believe all this autoimmune stuff started with this virus. I suspected that before I read any medical articles on the connection between the two. I will post my MRI results within a week. Take care of your bodies with this "pre- autoimmune" diagnosis because I had remission for two years with no symptoms and no medication just to trigger another "flare" by sunbathing in Las Vegas for a weekend. Crazy huh?

I think a lot of strange problems are caused by viruses which can take 2 years or more to leave your body.  My son and I had the same virus more than a year ago.  We believe it ramped up our Fibromyalgia and gave us various other debilitating symptoms.  Medical specialists don't know exactly what is wrong, but we both have imbalance, buzzing sensations, ear ringing etc.  I was recently diagnosed with an Acoustic Neuroma and am hoping it was not caused by the virus.  My son and I definitely don't want to have bilateral brain tumours which are both difficult and damaging to remove.

I have passed hearing, neurological and balance testing with flying colours despite my brain and body turning a bit "drunken", especially in darker environments.

 

I had malar rash for about a year and ANA tests came out as weakly positive. Coincidentally I went on a gluten free diet, rash disappeared and ANA retest came out negative. Later on I learned that gluten sensitivity can get misdiagnosed as lupus. 

Wow, I have an 18 yr old daughter with celiac disease.  I will definately try the gluten free diet.  Thank you SoupHero. :)

I have been tested for lupus twice already (today will be the third time). Recently I was ill, lethargy, swelling in the hands, legs and feet, persistent rash and extreme sensitivity to light. My doctor swears it was lupus even though the previous tests came back negative. However, I did test positive for ANA's. Due to that and my recent symptoms, she is diagnosing it as lupus and is referring me to a rheumatologist for treatment. I guess I am fortunate to have a family doctor who has dealt with this disease before and knows how sneaky it is.

Have you seen an ear nose and throat specialist? It may be something as simple as Meniere's syndrome. I was diagnosed with that, and most of my symptoms are the same as what you have described.

Yes, I saw an ENT specialist last year.  He sent me for hearing and balance tests, which I passed with flying colours.  An MRI revealed an Acoustic Neuroma and I think a virus I had ramped up my Fibromyalgia.  There are also other problems with my ears, which could be Meniere's Disease, but I'm actually afraid I may be developing Bilateral Acoustic Neuromas.  Today I was reading that if you have an ulcerated throat, it could be caused by Candida.  The cure is Acidophillus Bifidus.

 

shortness of breath is also a sign of fibro.

Shortness of breath can also be a side effect of certain drugs, including blood pressure medications. I read somewhere that most BP medications are tested on men, who generally have bigger hearts. Some of the stronger medications can give you a heavy feeling in the chest and can also slow your heart down too much, especially if you are small in stature (small heart). When I complained to my doctor, he switched me from Noten to Micardis.

My sister suffered from shortness of breath and doctors treated her for asthma. I said I thought there might be some other cause for her symptoms, and she was later diagnosed with Lupus.

I too have the same issues. I was tested many times for Lupus and was told there are 4 tests for Lupus and I test positive for 3 out of the 4. I also, have migraines and Antiphos-Philipid Syndrome (APS) . It all started when I got the APS, I have been diagnosed with everything from RA to Fibromyalgia. I have read articles from people that have APS who said the older you get the more auto-immune diseases you get. I'm beginning to believe she was right! I am in constant pain. I feel like my arms and legs are in vise grips and someone just keeps tighting them. I am on a sleew of medicines but I can't seem to get it under control. I have heard that people can go into remission but have not had the privledge of such a thing. I wish you luck, I too have lost faith in my doctors. Two have decided to stop practicing and go into research so now I need to start all over and explain my 8 years of issues to another doctor!