I think I'm losing my mind!
Boy did I have a scary experience this week. I was driving behind my husband when we were stopped at a red light. The light turned green and he started to go, but his car stalled. I wasn't anywhere close to him, but for some reason I hit him! It's like it just didn't register in my brain that he had stopped. It freaked me out because the kids were in the car with me and it could have been something more serious. Luckily it was just a little scratch.
During my appointment earlier in the week, I told my rheumy about a weird symptom I was having. When I cough, sneeze, laugh or even take a deep breath and let it out, I have these electrical shocks shoot through my arms from my shoulders and into my hands. It's really painful. The rheumy grew concerned at that (and the fact that my face, back and extremeties are always falling asleep) and ordered an MRI of my brain and spinal chord and is sending me to a neurologist. I guess he's either worried I have MS or that the Lupus has spread to my brain. I was wondering if anyone else has experienced anything like this? I guess the thing that really worries me is my slower-than-normal reaction time. I've noticed it several times, not only in the car.
This is probably information overload, but here is an article I found about Central Nervous System involvement in Lupus:
Central nervous system (CNS) involvement with SLE is very common. It may range from mild to life-threatening. It is the most difficult manifestation of lupus to diagnose--often hard to distinguish from symptoms of other diseases and medications.
In patients with SLE, approximately 24 to 51% have CNS involvement. Although CNS involvement with lupus has been the subject of many studies, it's difficult to compare the different studies because there are no standardized definitions for this type of involvement. While some researchers consider minor symptoms as indication of CNS involvement, others consider only the major symptoms. The following are the most recognized symptoms of CNS lupus:
Paresis (loss of sensation)
Dysfunction of motor skills
Organic brain syndrome (OBS)
A little further definition of some of the symptoms might be in order:
Cognitive dysfunction could be described as difficulty thinking/concentrating, difficulty speaking, difficulty remembering and difficulty using numbers--sometimes referred to (by patients) as brain fog. It is estimated (from several studies) that between 20 and 40% of SLE patients have some cognitive dysfunction. Psychologic profiles, such as the MMPI or the Wechsler Adult Intelligence Scale are often useful in diagnosing dysfunction, but their results can be skewed by medication and fatigue. Cognitive dysfunction can be found in children as well as adults, and seems to correlate to the presence and level of certain antibodies (anti-dsDNA, lymphocytoxic antibodies, anti-neuronal antibodies).
Headaches are the most frequent CNS manifestation for lupus patients. Studies indicate that about an equal number of headaches are either vascular (such as migraines) or muscular. There has been some association noted between the vascular form and the presence of Antiphospholipid antibodies. There is also indication that the vascular headaches correlate to disease activity. Treatment for these headaches can range from migraine treatment to simple aspirin--there is no single treatment that seems to work for all lupus patients with headaches.
More lupus patients have incomplete migraines or ocular migraines, than is normal for the general population. An incomplete or ocular migraine is described as beginning symptoms, common to migraines (such as visual disturbances), without the actual headache.
Seizures in Lupus have not been adequately studied. In part, because the incidence of seizures has significantly decreased in the past few decades--due to prompt treatment of serious manifestations. Some reports associate seizures to antiphospholipids. CNS involvement seizures usually respond to steroid therapy and/or anticonvulsive medications. The biggest problem in dealing with seizures and lupus, is that so many of the medications used to treat lupus can cause seizures: steroids, antimalarials and some cytotoxics.
Myelopathy--disease of the spinal cord-- is a rare manifestation of CNS lupus. It is indicated from some study results that there is an association between myelopathy and antiphospholipid antibodies. Studies have also shown a correlation between Lupus myelopathy and neonatal lupus, pulmonary hypertension, optic neuritis, asceptic meningitis and pregnancy.
There are 3 main presentations for lupus myelopathy: large spinal cord infarcts (areas that *die* because of lack of blood flow), spinal cord subdural hematomas (bleeding within the spinal cord) and subapical leukomyelopathy (disease of the conducting tracts of the spinal cord). The most effective treatments depend on the specific patient, and often include--high-dose steroids, heparin, and cyclophosphomide.
Peripheral neuropathy occurs in over 20% of all lupus patients. Symptoms include such things as: carpal tunnel syndrome, altered sensations (numbness, tingling, burning) in the skin, visual disturbances, facial pain, drooping of the eyelid(s), ringing in the ear(s), and dizziness. Symptoms may be due to conditions other than lupus (such as medications, injuries and other diseases).
Electrical studies, such as electromyogram (EMG) and nerve conduction tests are usually helpful in determining if symptoms are due to some other cause. Inflammation of the peripheral nerves (called mononeuritis multiplex) is treated with corticosteroids.
Dysfunction of Motor Skills
These manifestations are rare, occurring in only about 5% of patients with lupus. Symptoms usually consist of difficulty using muscles such as walking or grasping objects. The overwhelming majority of patients with these symptoms are children. Steroids and Haloperidol are the treatments of choice. It appears that a percentage of these patients (20%) also have evidence of antiphospholipid antibodies.
Organic Brain Syndrome
Any kind of injury upon the brain, can heal and scar--that includes injuries incurred from SLE. Organic Brain Syndrome is due to previous brain injury (from any cause) that has not healed properly. Up to 30% of lupus patients show evidence of OBS. True OBS (chronic) has no effective treatment--it is both non-progressive and irreversible.
Pseudotumor cerebri is a form of benign intracranial hypertension. Patients usually complain of headache. Their optic disks are usually swollen, but their spinal fluid is normal. It usually manifests in young women, and is associated with rapid steroid withdrawal, or dural venous sinus thromboses. Treatment usually consists of either high dose steroids or anticoagulation/antiplatelet agents.
There are several classifications for the causes of CNS involvement:
Vasculopathy (problems with the blood vessels)
Hyalinization (a substance formed on the vessel walls, that occurs when the vessel is degenerating)
Perivascular inflammation (inflammation around the blood vessels)
Endothelial proliferation (a thickening of the walls of the vessels)
Vasculitis (inflammation of the blood vessels)
Infarction (obtruction of the blood flow)
Subarachnoid (bleeding under one of the *coverings* of the brain)
Microhemorrhages (very small, sometimes undiagnosed, bleeding episodes)
Subdural (bleeding beneath the main covering of the brain/spinal cord)
Intracerebral (bleeding throughout the brain)
Meningitis (infection of the meninges--covering--of the spinal cord)
Perivascular inflammation (inflammation from infection around the blood vessels)
Focal cerebritis (specific places of inflammation within the brain)
Vasculitis (inflammation of the blood vessels)
Of course, the difficulty in treating and diagnosing CNS involvement stems from that fact that there are so many other reasons for most of these symptoms. The following possibilities need to ruled out before a patient is diagnosed with CNS involvement:
Non-lupus related disease
Multiple sclerosis or Lupoid sclerosis
Fluid and electrolyte imbalances
Diagnosing and treating a patient that has lupus with CNS involvement, can be very difficult. Because there are several reasons--outside lupus--that can cause these symptoms, it's important for you to be evaluated. What is included in a good evaluation? The following should be part of any good neurological exam:
CBC and Differential
Specialized Testing (which may or may not be available to all physicians)
PET or SPEC scans
Treatment for a patient with lupus that has CNS involvement, depends on the patient, the doctor, the disease. Medications can include: steroids, immunosuppressants, blood thinners, antibiotics, anti-convulsants, or anti-depressants. Although some patients have irreversible symptoms, a large percentage recover over a period of time.
I appreciate the info. You are the best!