12-06-2008, 08:13 PM
My rheumatologists just told me I have "brain lupus". I was wondering if anyone knew of somewhere I could learn more about it. I don't like to be overly informed but I like to know even that if I do notice something happening I can catch it early on. Cuz I don't know about the rest of you but I have stuff coming at me from all angles all the time and I find it hard to pick up on new problems until they start interferring with my life. For instance, I walked around on a broken foot for 2 weeks before I even noticed it was a pain I should be paying attention to. You know what I mean?
Anyway, the thing is the doctors tell me that I should be able to control it. But they have yet to find any immune suppressants or steriods that help or help for very long. I've always been rather immune to drugs. So I worry about my future. Because I've only been getting worse not better. And I've been diagnosed with lupus for 11yrs now.
12-07-2008, 03:15 AM
I'm not familier with this, hopefully one of the other members will be able to help you with your questions.
There's alot people on the board that are very good at researching information.
I just wanted to welcome you :)
12-07-2008, 02:43 PM
I'm wondering if your doctor means that you have central nervous system involvement. What are the symptoms you're having that make him think you have lupus affecting your brain?
12-07-2008, 06:12 PM
well first of all my doctor is italian so i think that was her way of sayin it was affecting my brain. i have white matter on my mri. she said also i had swelling of the brain.
my symptoms are bouts of blindness and paralysis on the left side. they tested me for ms and it was negative. but basically i have alot of the ms symptoms. some days i can't speak...i have severe tremors. intense pain in my arms and legs that go beyond the arthritis and fibromyalgia. i don't know...like most of u the list goes on and on and on.
i was reading somewhere and it said the brain is affected by 25% of lupus patients. i didn't think that was so uncommon perhaps someone here has experienced the same thing.
12-07-2008, 09:25 PM
Involvement of the central nervous system (CNS) can be mild to life- threatening in people with lupus. Estimates of the occurrence are widely varied and range between 10 and 80 percent of persons with Lupus have CNS involvement. Doctors need to also be aware of the signs and symptoms of neuropsychiatric lupus (NPSLE) disease because the signs and symptoms differ from CNS. They may be very subtle, such as mild headaches, altered mental activity, or depression. In the most severe form, seizures or partial paralysis can occur.
Lupus affects the CNS in several ways. Nerve tissue may be damaged when antibodies attack nerve cells or blood vessels. It is known that the nervous system requires an uninterrupted flow of blood, that is needed to supply with oxygen and nutrients its tissues. When this flow of blood is slowed or interrupted, the nervous cells are unable to function normally, and there appear symptoms. The symptoms vary, depending where the tissue injury is situated. It is good to know that the nervous system contains three parts. The central nervous system comprises the brain and spinal cord, the peripheral nervous system comprises nerve fibers that have the role to provide the skin and muscles the power needed for sensation and movement, and the third part is the autonomic nervous system that has the role to regulate spinal, peripheral nerves and to innervate the internal organs.
In peripheral nervous system lupus, involvement of the cranial nerves can cause visual disturbances, drooping of the eyelid(s), ringing in the ear(s), facial pain and dizziness.Symptoms of numbness or tingling in the arms or legs can appear if there is an inflammation of the blood vessels supplying the peripheral nerves. There can also appear symptoms due to other conditions than lupus and electromyogram and nerve conduction tests are usually helpful to determine if symptoms are due to some other cause. Corticosteroids are used to treat inflammation of the peripheral nerves.
There is an inflammation of the blood vessels of the brain that occurs in Lupus and about 10% of all lupus patients suffer from this. It is called central nervous system vasculitis. This disease usually requires hospitalization and high doses of corticosteroids. Some of the symptoms that appear are high fevers, seizures, psychosis and meningitis-like stiffness of the neck.
People that have both lupus and Sjogren's syndrome may be predisposed to develop vasculitis or cognitive dysfunction. Sometimes, circulating proteins in the blood can lead to cryoglobulinemia or hyperviscosity syndrome.
Diagnostic tests like sedimentation rate, ANA, anti-DNA, anti-ribosomal P antibodies and complement may be useful in order to determine nervous system involvement.There are neurodiagnostic tests, that include CT and MRI brain scans, brain waves or electroencephalogram and spinal taps.In a few hospitals, there can also be performed PET scans. The spinal fluid may be examined for cells, protein components and antineuronal antibodies. In patients with cognitive dysfunction, neuropsychologic tests may be helpful.
The treatment for nervous system lupus depends upon its source, and can include immunosuppressants, blood thinners, antibiotics, steroids, anti-depressants, counseling or surgery. You should know that, for many people with lupus, nervous system involvement is completely reversible with proper treatment.
Peace and Blessings