article I wrote for a different group I belong to about my illness.

[jdouglas111]

My name is Jessica and I have CNS Lupus.  CNS Lupus is a form of Systemic Lupus Erythematosus or SLE.  It is the involvement of the central nervous system in Lupus activity, in other words it is what they call the form of Lupus that attacks the brain/lungs/heart specifically.  This is my story, I hope you'll bear with me as I walk you through it.

I guess we should start at the beginning...I am 28 years old and was diagnosed about a year ago.  I ignored the signs that something was wrong with my body for 15 years!  I began having symptoms of Lupus when I was 13/14 years old.  It started as pain in my hands and feet, fatigue, and a general feeling of illness.  I was diagnosed with depression and told the pain/fatigue was because of the depression.  I dislocated several joints over the next couple of years, ended up at the Gastroenterologists office for a whole host of colon problems, had a series of awful gynecological exams to determine why I was clotting/bleeding so heavily, and went to the ER for chest pains/headaches a number of times. 

I was told over and over that I was young and nothing was wrong with me, they never performed xrays or took any blood samples because I had a terrible general practitioner who left instructions for the hospital to release me anytime I showed up as I was suffering from "hypochondria and exhibiting attention seeking behaviors" due to my mental health problems.   Eventually I believed them and gave up, I quit complaining and just decided this is how life must be for everyone and moved on. 

When I was 20ish I had what I realize now to be the first major flare up of my illness.  Over a series of months I went to the doctor several times for various problems ranging from hives to fevers and they couldn't find a thing causing any of it.  I saw a dermatologist, my regular doctor, my gastro, a second doctor from a different office for a second opinion and a dr at a walk in clinic.  Eventually I went to the ER covered in hives, bleeding from my colon, in terrible pain from head to toe, experiencing shortness of breath, and with such a bad migraine I was speaking gibberish and couldn't stay awake. They did a CT and a bunch of blood tests but didn't see anything major.  They diagnosed me as having had an allergic reaction to something (turns out it was the sun) and gave me a weeks worth of prednisone and some Benadryl and sent me on my way.  During that time I lost my job, I finished my college degree but I didn't walk at graduation or try to celebrate in anyway because I was so ill feeling.  I just assumed I was going to die soon and none of it mattered.  I started taking 800 mg ibuprofens and it helped me so much I thought I was cured; I even went off of my antidepressant!

 I continued to take a lot of ibuprofen up until we decided to get pregnant.  At that point things seemed good, I'd been feeling pretty good for a while so I thought whatever had been wrong was gone.  HA HA, the world seemed to crash in on me when I stopped taking the Ibuprofen, I was in so much pain and angry and frustrated and tired and having such bad headaches...I was about to give up on getting pregnant and admit myself to a psyche ward when we finally got a positive pregnancy test.  The next 10 months was insane, I had all kinds of lupus symptoms but my OBGYN just kept telling me it was because I was pregnant and my body was stressed and flooded with hormones.  I was off balance/exhausted/in horrible pain/confused/overly emotional/my hand and feet were constantly bright red/and I was severly anemic. 

After my son was born things got so much worse.  God bless my husband, I probably would have died if he hadn't been there for me.  I was told it was baby blues/depression and I'd get over it.  He saw it was more and did everything he could to get me to rest and take care of myself.  He saw how hard breastfeeding was on me and how exhausted I was all the time and he tried so hard to make me see that breastfeeding wasn't the only way our son would survive and that they all needed me to be healthy above anything else.  He held my hand when I sobbed about how much a failure I was and once I was quiet reminded me of all the great things I've done and will do.  He kept pushing me to go to a doctor to make them listen to me about my increasing cognitive issues/fatigue/pain.  I did but to the wrong doctor.  I saw my OBGYN who again told me it was hormones and I'd get over it.

Going back to work was hell, I was like a zombie.  I couldn't remember what I was doing.  I helped write the damn procedure for how to do our job before I left on maternity leave and I couldn't remember where to start or how to even find the procedure on our intranet...My husband was handling all of the night time stuff for our son, he was getting him ready in the morning, pretty much doing everything for him and I was still so tired I was falling asleep twice a day at work.  3 months into my return from maternity leave I was written up for my inability to perform even the simplest of tasks at work.  My boss told me I needed to go see a doctor and I finally listened.  I went to an ENT and they sent me for an MRI. 

The MRI was scary but it was even scarier when she called and told me I needed to be scheduled for an emergency meeting with a neurologist and she wouldn't tell me what my MRI results were just that they were abnormal.  I met with the neurologist who hospitalized me ASAP.  He ran every type of blood test/spinal tap/angiogram/urine analysis he could think of looking for any type of Alzheimer's/dementia/disease that could affect the brain.  They thought I had MS or cancer.  They couldn't figure it out, my white blood cell count was crazy, I was severely anemic my blood wouldn't clot, I had brain lesions, and damage to blood vessels in my brain but it didn't look like typical CNS vasculitus.  I had been ignoring my pain for so long I didn't tell him about it at the time, I should have!  He couldn't figure out what was wrong based on blood tests so I had a brain biopsy done.  The brain biopsy confused everyone even more!  The lesions where inflamed brain tissue that had become necrotic but they couldn't figure out how or why.  As soon as I was healed enough to travel from my surgery they sent me off to the Mayo Clinic in Rochester MN with a huge folder of test results, my MRI and CT films and the slides of my brain tissue.

Going to Mayo is a trip.  For 5 months I made almost biweekly trips with my Mom up there to see doctor after doctor after doctor.  (God has provided me with the most wonderful parents; they drove me back and forth to Mayo paying for gas and food and lodging each time.  I love them dearly.)    The doctors still couldn't figure it out.  One day I seemed fine but then at the next visit I couldn't think/talk right or I'd do something really bizarre like use toothpaste instead of soap on my hands.  I had MRIs, CTs, Salivary gland studies, I had an ECG, pulmonary function tests, neurological function tests, I was charted and measured in every way and I had every possible fluid taken and tested.  In the end they sent me to the rheumatology dept because my inflammation numbers were high and my anti phospholid something or other test was positive.  There I had a whole new slew of super in depth blood tests and it was finally discovered I had a connective tissue disease!  They called it "an evolving lupus like" condition and started me on my treatment regimen and found me a rheum here in the town I live in.  Things stalled out after that, I had an awful rheum who didn't listen to a thing I said and refused to follow the treatment guideline set up by my Mayo Dr so I called him back and had him switch me to the Univeristy of Iowa's care and there I have been treated wonderfully.  They are the ones who have diagnosed me as CNS Lupus and have made some huge headway in treating me.  My Dr. at the U is so wonderful; he used to work at Mayo so I no longer have to go see anyone up there.  The Dr at Mayo I was seeing has released me as his patient with the understanding that I may return if I want to in the future. 

I'm lucky.  My form of the illness developed very slowly and abnormally.  Most people with CNS Lupus don't know until they have a seizure or a stroke, some experience psychosis or a coma.  Mine was caught early; I only have mild brain damage so far.  And the damage done to my brain was mostly in the area that controls my language skills, specifically I have issues choosing my words/saying what I mean instead of the opposite of what I intend.  Hopefully since we caught this early they can stop it from progressing to the severe brain damaging monster it can be.  My prognosis is good but uncertain, my future is undetermined.  Right now my doctors and I are trying to put my Lupus into remission, so far we haven't succeeded but they are hopeful we can do this without starting chemo drugs. 

 

How my illness affects me: 

On a daily basis my illness causes me:

 A lot of pain in my joints/upper back/lower back/hands and feet. 

Migraines/tension headaches

Severe fatigue

Eye/mouth dryness

Dry skin

Jaw pain

Mouth sores

On a fairly routine basis my illness causes me:

                Mood swings/depression

                Mild hallucinations (not like an acid trip but sudden color swirls or noises)

                Ski n rashes

                Sun sensitivity

                Shortness of breath

                Chest pain

                Stomach problems

These feelings like all of my insides have become 3 sizes too large for my thoracic cavity and are   going to explode

                Mild confusion

Visual alternations

On an irregular basis my illness causes me:

                Severe confusion/cognitive dysfunction

                Fevers

                Skin sores

                Stomach aches

                Loss of appetite

                Erratic behavior

                Balance problems

Hidden things with my illness:

There are a number of side effects of my illness that are not seen/felt by me but I am assured I am experiencing to some degree based on tests.

                Blood clots

                Hyperviscosity (thickening of the blood)

                Inflamed lymph nodes for no known reason

                Anemia

                Lung nodules

                Tachychardia

                Pluerisy

                mild organic brain syndrome      

[Cheepingmom]

My goodness! I have been diagnosed with Sjogrens and I was diagnosed/undiagnosed with lupus in Sept.2011.  I am experiencing migraines, aura, "seizure like" feelings but I don't actually pass out, and mild confusion and fog. I am extreemly sensitive to the sun and florescent lighting.  I have to turn the lights off in my office and I put up a room darkening curtain there.  I am the director and I am forgetting things that I have been doing forever.  I feel stupid. I have had a rash on my face for the last 3 days and I keep getting a low grade fever and my blood pressure drops, I get dizzy and my chest hurts. I went to have my blood drawn in hopes that my ana would be positive again...although my double stranded dna is positive.  Thank you for telling your story! It certainly helped me get a list of questions together for my doctor.

[jdouglas111]

I'm glad you found it helpful!  I hope they can help you out.  I have had a hell of a time and all I keep getting told is "this is what lupus does".  So frustrating.  And the forgetting stuff is the worse!