WHY BUTTERFLIES

THE BUTTERFLY REPRESENTS FREEDOM, TRANSFORMATION, AND RECOVERY.  ONE COMMON SYMPTOM OF LUPUS IS CALLED A BUTTERFLY RASH. IT IS A RED RASH ACCROSS THE NOSE AND CHEEKS THAT RESEMBLES A BUTTERFLY.

THIS IS WHY THE BUTTERFLY HAS BECOME A SYMBOL OF HOPE FOR LUPUS PATIENTS . THEY ARE PRETTY AND IF IN PURPLE I FIND TO HAVE MORE OF A MEANING SINCE PURPLE REPRESENTS COURAGE AND ENDURANCE, SOMETHING WE NEED ! I LIKE TO PICTURE MY SELF BEING A BEAUTIFUL BUTTERFLY FLOATING AROUND BEING FREE MINUS THE RASH. : )

Advertisement

MAY IS LUPUS AWARENESS MONTH

MAY IS A TIME TO COME TOGETHER AND HELP RAISE NATIONAL AWARENESS FOR ALL FORMS OF LUPUS. THIS IS TIME TO SHOW SUPPORT FOR THE MILLION PLUS PEOPLE IN THE US WHO ARE AFFECTED BY THIS CHRONIC INCURABLE AUTOIMMUNE DISEASE. PLEASE VISIT LUPUSLA.ORG OR LUPUS INTERNATIONAL SOME OF MY POEMS HAVE BEEN PUBLISHED IN LUPUS INTERNATIONAL (WHEN I CAN FIGURE OUT HOW TO PUT IT ON HERE I WILL ) I CAN NOT WAIT TO SHARE MORE.

THIS THURSDAY IS LUPUS LA’S YEARLY ORANGE BALL TO RAISE  FUNDS FOR RESEARCH AND SPREAD AWARENESS . IM AM HAPPY TO ANNOUNCE I AM PART OF THIS EVENT IN SHARING MY STORY AND EXPERIENCES TO HELP OTHER’S .

 

11 vials today and Neurology

Today was a long day …Bare with me my cognitive abilities are making it so I am not able to figure out how to put up images , photos, and links to the site. The treatment for the cerebral vasculitis is usually high dose iv steriods and chemo. I have  alot to still do in terms of tests to get down to a treatment plan for me , it is  challenging for the doctor’s and myself due to my system being hypersensitive and the adverse reactions to many of the drugs used for treatments.

I am  thankfull to find a group of people here that are very kind and open to everyone. After a long stressful day. I got a rest in and for an hour was able to attend this gathering. For me I am happy for one hour vs none.  The daily medical is too much for my brain to process  and it needs a break. They all started at 5pm, to celebrate a birthday , I am happy i showed just to say hi and feel like i am part of something ,

 

 

 

 

What is CNS Lupus?

CNS-fatigue

Lupus is an autoimmune disease that can affect almost any part of your body, including the nervous system and brain. There are several terms doctors use to describe this: neuropsychiatric lupus (NPSLE), neurocognitive dysfunction, or central nervous system lupus (CNS lupus).

The nervous system has three parts, any of which may be affected by lupus.

·  The central nervous system (CNS)—The brain and spinal cord.

·  The peripheral nervous system (PNS)—The network of nerves that connects the brain and spinal cord to the rest of the body, and gives skin and muscles the signals needed for sensation and movement.

·  The autonomic nervous system (ANS)—Allows communication between spinal and peripheral nerves and the brain and internal organs, and controls functions like breathing, blood flow, and heart rate.

People with lupus can experience a number of complications when their nervous system is affected. The symptoms may come on suddenly or may come and go, but they will vary depending upon the location and extent of the tissue injury. These symptoms also can be present in other diseases, so diagnosing lupus-related nervous system disorders is often difficult.

Neurologists are physicians who specialize in the nervous system. They may rely on a number of diagnostic tools to determine whether lupus is involved in cognitive problems:

·      Brain scans (MRI and CT)

·      Electroencephalograms (to capture the electrical pattern of brain activity)  ·      Spinal tap (to examine fluid in the spinal column)

·      Behavioral and cognitive tests may also be done to find out if your memory or other mental abilities have been affected.

Depending on the symptoms, a variety of medications are available to treat lupus-related nervous system disorders, including non-steroidal anti-inflammatory drugs, antimalarials, and steroids. Your response to treatment may be rapid or gradual over several months. For many people with lupus, nervous system involvement is completely reversible.

Central Nervous System (CNS):

When lupus affects your central nervous system, many symptoms may occur, including:

·      Headaches

·      Confusion

·      Fatigue

·      Depression

·      Seizures

·      Strokes

·      Vision problems

·      Mood swings

·      Difficulty concentrating

·   Lupus Fog or Cognitive Dysfunction

As many as half of all people with lupus describe feelings of confusion, fatigue, memory loss, and difficulty expressing their thoughts. This collection of symptoms is termed cognitive dysfunction, although many people with lupus call it “lupus fog.” Cognitive dysfunction most often affects people with mild to moderately active lupus. The causes of these symptoms, and the reasons the symptoms tend to come and go, are unknown.

Living with cognitive dysfunction can be very frustrating. However, you can learn to improve your concentration and lessen confusion and memory loss with a variety of coping skills, including puzzles, games, biofeedback, using a daily appointment calendar, and balancing daily activities to reduce stress.

Lupus Headache  Compared with the general population, people with lupus may be twice as likely to experience migraine-like lupus headaches, commonly known as lupus headaches. The features of lupus headaches are similar to migraines and may be seen more often in people who also have Raynaud’s phenomenon. However, headaches can also be caused by vasculitis, a symptom of active lupus due to inflammation of the blood vessels.

Medication Side Effects:

Medications used to treat lupus can cause side effects that are similar to the symptoms of CNS lupus. If you have symptoms of CNS lupus you should consult a neurologist who can determine which symptoms are side effects of medication and which are due to lupus. The drugs most known for causing symptoms like those of CNS lupus are:

·      Non-steroidal anti-inflammatory drugs (NSAIDs) – May cause headache, dizziness, confusion, and in rare instances, meningitis-like symptoms

·      Antimalarials – Very high doses (not usually given for lupus) may cause manic behavior, seizures, psychosis

·      Corticosteroids – May cause agitation, confusion, mood swings, psychosis, depression 

·      Anti-hypertensive medications – May cause depression or loss of sex drive  

A serious form of lupus called CNS vasculitis may occur when there is inflammation of the blood vessels of the brain. Characterized by high fevers, seizures, psychosis, and meningitis-like stiffness of the neck, CNS vasculitis is the most dangerous form of lupus involving the nervous system and usually requires hospitalization and high doses of corticosteroids to suppress the inflammation.

My team has recently confirmed that I’m coping with cerebral vasculitis…. what is it?

 

 

 

 

What is vasculitis?
Vasculitis is the inflammation (swelling) of the blood vessels, the network of hollow tubes that carry blood throughout the body. Vasculitis can affect very small blood vessels (capillaries), medium-size blood vessels (arterioles and venules), or large blood vessels (arteries and veins). If blood flow in a vessel with vasculitis is reduced or stopped, the parts of the body that receive blood from that vessel begin to die.

What causes vasculitis?
In most cases, the exact cause is unknown, but the immune system (which helps keep the body healthy) plays a role. While the immune system usually works to protect the body, it can sometimes become “overactive” and attack the body. In most cases of vasculitis, something causes an immune or “allergic” reaction in the blood vessel walls.

What is central nervous system vasculitis?

Central nervous system (CNS) vasculitis is inflammation of blood vessel walls in the brain or spine. (The brain and the spine make up the central nervous system.) CNS vasculitis often occurs in the following situations:

• accompanied by other autoimmune diseases such as systemic lupus erythematosus, dermatomyositis, and, rarely, rheumatoid arthritis;
• infection, such as viral or bacterial;
• systemic (affecting the whole body) vasculitic disorders (Wegener’s granulomatosis, microscopic polyangiitis, Behçet’s syndrome);
• it can occur without any associated systemic disorder. In this case, the vasculitis is only confined to the brain or the spinal cord and it is referred to as primary angiitis of the CNS (PACNS).

What is the cause of central nervous system vasculitis?
How the vessels in the brain become inflamed is not entirely clear. In some vasculitic diseases, abnormal antibodies (autoantibodies) attack white blood cells, which attack vessel walls and cause inflammation and destruction of the vessel wall. Infection caused by a virus can also cause CNS vasculitis.
Is central nervous system vasculitis dangerous?
CNS vasculitis can be a serious condition. The inflamed vessel wall can block the flow of oxygen to the brain, causing a loss of brain function. In some cases, CNS vasculitis is life-threatening.

What are the symptoms of central nervous system vasculitis?
Symptoms of CNS vasculitis can include the following:
• severe headaches that last a long time
• strokes or transient ischemic attacks (“mini-strokes”)
• forgetfulness or confusion
• weakness
• problems with eyesight
• seizures
• encephalopathy (swelling of the brain)
• sensation abnormalities
What is vasculitis?
Vasculitis is the inflammation (swelling) of the blood vessels, the network of hollow tubes that carry blood throughout the body. Vasculitis can affect very small blood vessels (capillaries), medium-size blood vessels (arterioles and venules), or large blood vessels (arteries and veins). If blood flow in a vessel with vasculitis is reduced or stopped, the parts of the body that receive blood from that vessel begin to die.
What causes vasculitis?
In most cases, the exact cause is unknown, but the immune system (which helps keep the body healthy) plays a role. While the immune system usually works to protect the body, it can sometimes become “overactive” and attack the body. In most cases of vasculitis, something causes an immune or “allergic” reaction in the blood vessel walls.

What are the symptoms of vasculitis?
Symptoms of vasculitis include:
• skin rashes
• fatigue (tiredness)
• weakness
• fever
• joint pains
• abdominal (stomach) pain
• kidney problems (including dark or bloody urine)
• nerve problems (including numbness, weakness, and pain)
Other symptoms can occur, depending on the area of the body affected by vasculitis. If a blood vessel with vasculitis is small, the vessel may break and produce tiny areas of bleeding in the body. These areas will appear as small red or purple dots on the skin. If a larger vessel is inflamed, it may swell and produce a nodule (lump or mass of tissue), which may be felt if the blood vessel is close to the skin surface.


What is central nervous system vasculitis?
Central nervous system (CNS) vasculitis is inflammation of blood vessel walls in the brain or spine. (The brain and the spine make up the central nervous system.) CNS vasculitis often occurs in the following situations:
• accompanied by other autoimmune diseases such as systemic lupus erythematosus, dermatomyositis, and, rarely, rheumatoid arthritis;
• infection, such as viral or bacterial;
• systemic (affecting the whole body) vasculitic disorders (Wegener’s granulomatosis, microscopic polyangiitis, Behçet’s syndrome);
• it can occur without any associated systemic disorder. In this case, the vasculitis is only confined to the brain or the spinal cord and it is referred to as primary angiitis of the CNS (PACNS).


What is the cause of central nervous system vasculitis?
How the vessels in the brain become inflamed is not entirely clear. In some vasculitic diseases, abnormal antibodies (autoantibodies) attack white blood cells, which attack vessel walls and cause inflammation and destruction of the vessel wall. Infection caused by a virus can also cause CNS vasculitis.


Is central nervous system vasculitis dangerous?
CNS vasculitis can be a serious condition. The inflamed vessel wall can block the flow of oxygen to the brain, causing a loss of brain function. In some cases, CNS vasculitis is life-threatening.


What are the symptoms of central nervous system vasculitis?
Symptoms of CNS vasculitis can include the following:
• severe headaches that last a long time
• strokes or transient ischemic attacks (“mini-strokes”)
• forgetfulness or confusion
• weakness
• problems with eyesight
• seizures
• encephalopathy (swelling of the brain)
• sensation abnormalities


How is vasculitis diagnosed?
The diagnosis of vasculitis, including CNS vasculitis, is based on a person’s medical history, symptoms, a complete physical examination, and the results of special laboratory tests. Blood abnormalities that are found in vasculitis include:
• anemia (a shortage of red blood cells)
• a high white blood cell count
• a high platelet count
• kidney or liver problems
• allergic reactions
• immune complexes
• antibodies (tools the body uses to fight off threats)
• elevation of inflammatory markers
In PACNS, when the vasculitis is only confined to the brain or spinal cord, the above symptoms and signs are often lacking and patients present with symptoms of CNS vasculitis only.
Other tests may include X-rays, tissue biopsies (taking a sample of tissue to study under a microscope), and blood vessel scans. The physician might also want to examine the spinal fluid to see what is causing the inflammation. This test is often performed in CNS vasculitis.
To help in the diagnosis of CNS vasculitis, the physician may order a magnetic resonance imaging or angiogram of the brain. An angiogram can show which blood vessels are narrowed.
Because other conditions can cause some of the same brain vessel abnormalities as CNS vasculitis, a brain biopsy is the only way to make certain of a diagnosis. A brain biopsy can distinguish between CNS vasculitis and other diseases that may have similar features.


How is central nervous system vasculitis treated?
CNS vasculitis is usually treated with steroids. High-dose steroids such as prednisone, in combination with cyclophosphamide (a medication that decreases the immune system’s response to autoimmune diseases), are generally used. In some cases, high-dose steroids alone are tried first; if that does not treat the disease, cyclophosphamide is added. Treatment must be continued for a prolonged period, sometimes for life.
If the patient has another illness (such as lupus) that is related to the vasculitis, then that illness also needs to be treated.

The diagnosis of vasculitis, including CNS vasculitis, is based on a person’s medical history, symptoms, a complete physical examination, and the results of special laboratory tests. Blood abnormalities that are found in vasculitis include:
• anemia (a shortage of red blood cells)
• a high white blood cell count
• a high platelet count
• kidney or liver problems
• allergic reactions
• immune complexes
• antibodies (tools the body uses to fight off threats)
• elevation of inflammatory markers
In PACNS, when the vasculitis is only confined to the brain or spinal cord, the above symptoms and signs are often lacking and patients present with symptoms of CNS vasculitis only.
Other tests may include X-rays, tissue biopsies (taking a sample of tissue to study under a microscope), and blood vessel scans. The physician might also want to examine the spinal fluid to see what is causing the inflammation. This test is often performed in CNS vasculitis.
To help in the diagnosis of CNS vasculitis, the physician may order a magnetic resonance imaging or angiogram of the brain. An angiogram can show which blood vessels are narrowed.
Because other conditions can cause some of the same brain vessel abnormalities as CNS vasculitis, a brain biopsy is the only way to make certain of a diagnosis. A brain biopsy can distinguish between CNS vasculitis and other diseases that may have similar features.


How is central nervous system vasculitis treated?
CNS vasculitis is usually treated with steroids. High-dose steroids such as prednisone, in combination with cyclophosphamide (a medication that decreases the immune system’s response to autoimmune diseases), are generally used. In some cases, high-dose steroids alone are tried first; if that does not treat the disease, cyclophosphamide is added. Treatment must be continued for a prolonged period, sometimes for life.


If the patient has another illness (such as lupus) that is related to the vasculitis, then that illness also needs to be treated.
Image

 

Where to begin?

I’m new to blogging and look forward to expressing myself and sharing experiences with others… this is just me messing around…. here I am at CPMC in San Francisco doing a sleep study test. My daughter took this picture.

IMG_0101