AboutCynthia Donlan Expertise I am comfortable answering questions about Systemic Lupus, diagnosis , lab results. Coping strategies.. I am not as comfortable answering questions about medications and interreactions.
Experience I am a woman who suffers with Systemic Lupus Erythematosus along with other autoimmune phenomenon. I am the Lower County Representwtive for the Lupus Foundation of PA, I am also the local support group facilitator.
Organizations Lupus Foundation OF PA
Publications I have been on several local talk shows discussing lupus. I have had a few articles published in Lupus Foundation of PA Newsletter. My story was published in the Platelet Foundation of America book on ITP a few years ago and I am always having articles in our local papers.
Education/Credentials I have a Bachelor of Science degree in Liberal Arts from College Misericordia and Masters of Science degree in Special Education from Bloomsburg University
Question QUESTION: Well how does lupus affect the brain?
Like how does it make you go crazy?
ANSWER:
Dear Corrina:
How can I tell thee let me count the ways!
Lupus affects the brain and nervous system in a remarkable amount of manifestations, it is absolutely amazing!
I can tell you from personal experience how it impacted on my life in very concrete ways.
, Lupus and other illnesses, especially autoimmune disorders can cause mental illness and psychiatric symptoms.
They can make a person appear psychotic, they can make a person act like they have Alzheimer’s etc.
The problem with medicine today is that there is a popular trend to treat symptoms and not see the big picture.
Two-thirds of patients with systemic lupus erythematosus are at risk for developing neuropsychiatric symptoms.
Headaches are a typical symptom of this phenomenon as well as confusion, depression, mood swings that border on bi-polar, psychosis, anxiety, seizures, gait disturbances, movement disorders, dementia, speech trouble, strokes, sleep disorders and neuropathy.
Even paranoia.
A lot of Lupus patients become substance abusers in an attempt to "self medicate" and ameliorate their symptoms.
Symptoms tend to wax and wane with alternating periods of flares and remissions.
In most patients symptoms develop within the first two years of the onset of SLE although symptoms can occur at any time.
Naturally the frustration over dealing with the illness and the impact it has on their lives does not help matters. Also many of the medication used to treat Lupus such as corticosteroids can cause psychiatric symptoms. So it takes a seasoned doctor to be able to figure it all out.
I KNOW I HAVE BEEN THERE.
Lupus made me develop bi-polar symptoms, it made me before treatment hit my mother, become paranoid and angry and moody. It made me confused, forgetful clumsy.
As an adolescent I was diagnosed with ADHD and as an adult my doctors question the diagnosis because as the same time I was exhibiting those behaviors, I also was exhibiting, nose bleeds, fatigue, frequent urination, fevers, bruising, etc.
Docs sometimes do not look at the psychiatric symptoms as a red flag for medical problems. They just treat the symptoms without making the correlations.
A good Doctor like the fictional House looks out side the box to the bigger picture.
Dr. Sydney Walker in his Book “A Dose of Sanity” talks about how smug physicians have gotten with giving people psychiatric labels without looking for physical causes.
Psychiatrists have forgotten that they are physicians and do not look for the causes of neuropsychiatric symptoms, they just treat them.
In some of these cases it doesn’t take much thought to realize what’s happening, as, for example, when a person who has had a heart attack becomes depressed. But in other cases, such as thyroid disease or pancreatic cancer, a person can have an illness and not even know it, because the only thing that seems out of order may be a feeling of depression or anxiety, perhaps in conjunction with vague bodily pain. Only a competent investigation into the cause of the psychological symptoms will lead to a discovery of the medical condition.
The brain and nervous system in Lupus and other autoimmune diseases is affected in so many ways. strokes, seizures, headaches, neuropathies, transverse myelitis, and movement disorders, cognitive deficits, depression, mania, anxiety, psychosis, delirium and demylenating syndromes commonly occur.
Cognitive dysfunction and personality changes are the most common neuropsychiatric disorder uncovered in patients with Systemic Lupus and other autoimmune diseases.
Cognition means thinking, problem solving, taking in, storing, processing, and retrieving information. It also includes attention, memory, and being able to “shift gears” when faced with a problem.
Lupus patients at times describe being in a:” Lupus Fog” They have problems focusing, thinking clearly or paying attention to things around them
Lupus patients can become irritable, moody, hyper, sensitive, paranoid and extremely clumsy and forgetful.
IT IS NOT THERE FAULT AND THEY ARE NOT CRAZY and even if they did show signs of severe mental illness, that in itself can be a sign of Lupus.
Testing for cognitive involvement is a lot harder then the more concrete brain and nervous disorders that lupus and other auto immune diseases can cause.
You can run an EEG to find seizures; you can do an MRI to look for lesions but the more subtle symptoms of Lupus such as mood disorders, or cognitive dysfunctions, need the expertise and exhaustive knowledge base of a good Neuropsychologist or clinical psychologist to find.
A series of specific neuropsychiatric tests must be performed and a willingness on the part of patients to be totally honest before a proper diagnosis can be made.
Most people, who experience psychiatric problems, have deep problems with acceptance and admittance due to societal disdain for the mentally ill.
Mental Illness is a biochemical disorder not a problem of motivation or morality. Despite what Mr. Tom Cruise liked to advocate, most people with Mental Health Issues did not create their own problems or cure themselves without proper care and support.
Neuropsych symptoms of Lupus can also have other origins other then the Lupus itself and these causes must not be overlooked. Infection, other systemic illness, or drug side effects.
Steroids are notorious for causing Psychotic episodes when prescribed at a high dose and can be managed easily by adjustment of medication level and concomitant treatment with anti-psychotic medication.
I hope I answered your questions.
God Bless and write me if you need more info.
Cynthia
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QUESTION: Well are the symptoms always there or do they just come out at certain times?
ANSWER: Dear Corrina:
People with lupus often experience headaches, confusion, difficulty with concentrating, fatigue and occasion ally have seizures, strokes, or other signs of nervous system involvement.
Each person's journey with lupus is different. People can experience increased symptoms when going into a flare but all most all of the time a person with lupus will experience some kind of soft neuro or psychological symptoms.
Typically Mental health symptoms show their heads before other symptoms. Cognitive difficulties, such as attention span issues, fatigue and anxiety ,may make an adolescent be misdiagnosed with ADHD.
So quick and prompt diagnosis is essential, however diagnosis cannot predict when and where the disease will manifest itself.
So each individual must be conscious of their own symptoms, to be able to report them and get treated.
Thans for writing me Corrina
Cynthia
---------- FOLLOW-UP ----------
QUESTION: You're welcome.But can lupus come in children or babies?
Answer Dear Corrina:
Unfortunately the Answer is yes.
Babies and children can get it.
When babies get it is called neonatal lupus. This form usually happens to mothers who have Anti SSa antibodies and the best part about it is that once the baby leaves the mothers body after a few weeks or months it typically clears up and the baby goes abck to being normal.
Childhood lupus is different....
Most doctors will tell you that Lupus occurs most frequently among women between the ages of 15 and 45. However, they tend to forget that lupus can occur in either gender at any age.
Early diagnosis is the key to getting the best possible outcome for children with systemic lupus. With early diagnosis and treatment, much of the long-term organ damage associated with SLE can be prevented and the prognosis is greatly improved.
Many kids with Juvenile Lupus with constant monitoring and a few life modifications can go on to live normal productive lives just like kids with diabetes or juvenile rheumatoid arthritis.
The most important cause for delay in the diagnosis of childhood SLE is the failure of the initial physician to consider the possibility of a lupus diagnosis.
Most primary care physicians expect any person, child or adult with SLE to walk into their office with a classic "butterfly rash." In reality, less than one-third of people with systemic lupus will have this facial rash when they first see a physician. And even when the butterfly rash is present, it is called rosacea.
Also they expect ALL Lupus patients to have a positive Double Stranded DNA antibody test. This is not only the case with Primary care docs but many unenlightened rheumatologists as well.
According to Dr. Daniel Wallace, M.D., one of the Leading authorities of Lupus in the country. Only 50% of Lupus patients ever develop that antibody.
Also they are told that many of their symptoms are "growing "pains" or a reaction to the stress of school or deep seated family problems or they were overly physically active and strained themselves.
The joint pain, fatigue and mood swings are seen as just normal parts of childhood. Even if a child's test results come back that he is anemic, it will be blamed on an ill proper diet.
Parents must be vigilant and demand that the child's symptoms be taken seriously. The child may not have Lupus but they indeed may have something else which may be hard to detect but running havoc in their system.
I have been there. I shown signs of Lupus since I was around 13 and it took years before a proper diagnosis was made but alas, it was and I am now doing much better.
One area of great concern for families is the child with a strong family history of SLE. Often, one-third of the relatives of an individual with SLE will be ANA positive, but will have no disease. However, there is an increased incidence of SLE in families
SLE in childhood can usually be easily diagnosed and treated by an experienced physician. When the disease is detected early it can often be treated successfully, and significant long-term complications may be prevented.
