Dana Renwick

My journey with SLE began when I was 16 years old. I was a very active teenager and involved in many sports. I was an average student, but I did try hard. I lost a friend in a car accident that year, which was quite traumatic. Death when you are young is so hard to digest because we feel that we are so “invincible”. I learned differently with him passing away and me getting sick a month later.

My parents took me to Emergency the first time because I had numbness from my hand up to my face and ended with me having problems breathing. The doctor thought that I had an allergic reaction to peanuts. I was given an Epi-pen in case this happened again. These attacks continued, although at first they were quite far apart. They would start in my leg and march up into my face; they would go away and I would start vomiting. I ended up sleeping for a long time afterwards. After a few, I was sent to a Neurologist who felt I was having migraines. He treated me with aspirin and painkillers and sent me for a CT scan. The scan showed 4 brain clots, which is scary business. I had 3 attacks the night I was admitted to the hospital. I was extremely confused, hallucinating, couldn’t follow commands, had mouth sores, joint pain, double and blurred vision and was throwing up. The Neurologist did a spinal tap, showing over 200 lymph cells in my spinal fluid, normal is 0-15! Both of my eyes showed optic nerve swelling. They treated me for probable Encephalitis. Looking back now, I think it was probably the Antiphospholipid Syndrome starting up.

I was still in the hospital a month later, having problems with my memory and walking. I was sent to another city for a confirmation of diagnosis. The second Neurologist did another spinal tap, and it still showed lymph cells, which he said was odd. I was tested for SLE. They did an Anti-DNA, Anti-RO, Anti-SSA and a Rheumatoid Factor. All of these tests were positive! No one let us know about this however. When we asked, we were told later they were probably “false positive”. One would assume this would be an ending to my journey to a diagnosis but it wasn’t. I ended up completely paralyzed from the waist down and lost the ability to use my left hand. I was sent to a Rehabilitation Center to start active rehab to get the use of my legs back and get better. This is when they started querying psychiatric things, such as “Conversion Disorder”. There were about 6 diagnoses thrown around at that time, from Post-Encephalitis Syndrome, Multiple Sclerosis, Systemic Lupus Erythematosus to, of course, Conversion Disorder. Conversion Disorder means you "believe" that you have something wrong, and you display a physical problem that cannot be explained by medical tests. I was sent to a city in another province and that Neurologist told me I probably had Post-Encephalitis Syndrome. They still didn’t really know. No one could come to a consensus on what was going on with me. Finally, I went home and did outpatient physiotherapy and occupational therapy. I went back to school, in grade 11. I had a memory problem, but I overcame it with hard work and tutoring. I made a promise to myself that I would walk again, and I did. It took a year of hard work, but I regained the ability to walk! I was so happy, because I could participate in sports, and act like a teenager again.

The next step in my journey was at University in 1995. I had a bit of left sided weakness and visual problems in my left eye. A Neurologist confirmed that I had inflammation in my optic nerves again. Nothing really came of it, and it went away after awhile. After that, it was Diabetes; I was diagnosed in 1996, at 19 years of age. They didn’t know what the cause was, because the presentation of my diabetes was truly unique! They called it “Dana Diabetes”. I was getting used to being known as a “difficult case”. I then had periods of optic nerve swelling, stomach difficulties and joint pain. I would get migraines off and on and end up in Emergency to get something for the pain.

The next eventful time in my life was when I had a kidney infection in 2001. I was in the hospital for a month; they felt that the infection may have gone into my bones. I was so sick! I had major fatigue, joint swelling, fever, mouth sores, and back pain from the kidneys. Antibiotics didn’t do the trick. It took me four months to feel well enough to return to work! Still, I had no idea about the possibility that Lupus could be responsible.

In January of 2002 I started having fatigue, major joint pain, rashes, and extreme abdominal pain. I found out that I had an 8cm cyst on my ovary, eventually it burst and another one appeared. I was put on a narcotic medication because the pain was so unbearable in my abdomen. My Internal Medicine doctor was so good to me; she tried to test me for every possible thing. It ended up that I had to leave my job, my apartment and friends to come home to my parents because I was getting so ill. I was waiting for appointments with a bunch of specialists, and the wait lists were long.

Everything declined in August of 2002. I noticed that objects were getting an “aura” around them. I started to get scared when my vision went blurry, then go double and correct itself back to straight. My Optometrist was quite concerned because I had optic nerve swelling in both eyes. I saw an Ophthalmologist within two days, and he confirmed that I did have Optic Neuritis. I was sent for an emergency CT scan to see if I had a brain tumor or lesions. It came out negative. My Ophthalmologist referred me to a Neurologist for a spinal tap. I was admitted to hospital to find out what was going on. My spinal tap was normal, and so were lots of tests. They found a neuropathy in my left arm, inflammation in 6 spinal discs, a chronic mycoplasma in my blood, GERD and reactive gastritis. I had a roaring face rash, mouth sores all over my mouth, hair loss, abdominal pain, white, sore hands and feet, and major fatigue. Toward the end of my hospital stay I started having a left sided tingling. No doctor could figure it out, so they discharged me with no follow up. My Lupus tests were all negative again which stumped them all! When I got home, I researched Mycoplasma and found out that it can mask blood work, and this made complete sense in my case.

Next, I went out of province again to see a Rheumatologist and Internal Medicine doctor in January, 2003. These were supposed to be second opinions,but they didn’t end up being! The Rheumatologist tested me again for Lupus, and all tests were negative. She didn’t want to commit so I continued on. The Internal Medicine doctor felt I had a psychological cause for the left sided weakness and tingling. I felt, “Here we go again!!”. She found notes from 1992, alluding to Conversion Disorder so she ran with it. She recommended I see a Psychiatrist! This was not the answer, although I did say I would see one to rule out a psychiatric problem. I cried for two days, because I was going nowhere and I wanted to know what was going on with me.

I found Dr. Graham Hughes, a Rheumatologist in London England, while using a message board as a source of support and help. Dr. Hughes was a catalyst in finding something called Antiphospholipid Syndrome (named Hughes Syndrome after him) in the 1980’s. A lady I had been chatting with had gone to see him because she was having Neurological problems related to Lupus that no one could figure out. She called me when she returned and said “Dana, you need to see Dr. Hughes. He will figure you out, I promise! You are a poster child for Antiphospholipid Syndrome!” I spoke with my supportive GP and she put in the consult. I was terrified that it was going to be a mistake. I wasn’t sure what I was doing, but I figured that Dr. Hughes would tell me if this could be Lupus and Hughes Syndrome! I had a three-month wait, so this gave me time to make arrangements. My mom accompanied me; I am so glad to have her as an advocate she is a brilliant woman!

I saw Dr. Hughes on August 14th, 2003. I put together a binder of my “health life” with the positive Lupus tests from 1992, MRI’s and CT scans. When we got to Dr. Hughes office, I was absolutely terrified. Within two seconds of him shaking my hand I was calmed. He was so kind to me, asked me tons of questions and looked at my chart. My mom and I sat flabbergasted at this wonderful man, he was so caring and gentle with me. He tested me for Sjogren’s Syndrome by inserting a blot paper into the bottom of my eye to check the eye moisture. I definitely was positive for Sjogren’s Syndrome. This syndrome causes dry eyes, dry mouth, dry nose etc. It proved that something autoimmune was going on. He stated “If you listen to the patient, they will tell you the diagnosis”. Dr. Hughes does not rely fully on current blood work, but on careful observation, symptoms and past blood work. He will diagnose some patients who have never had positive blood work. Not very many doctors will do that! He looked in my eyes and saw the optic nerve swelling. He found “livedo reticulitis”, a webbed pattern that appears on the legs and arms. He checked me from head to toe, and came to the conclusion that I probably had Lupus, Sjogren’s Syndrome and Antiphospholipid Syndrome. He sent me to the hospital where I could meet people at his Lupus clinic and the head of the Hughes Syndrome Foundation. It was a magical trip! He saw me 4 days later to confirm his findings. My blood work was negative, but he had all the proof he needed to diagnose me! I was relieved because I wasn’t crazy. I was so terrified that I was, deep down, and that I was just a hypochondriac. Finally, I didn’t have to sell myself health wise. It was done and done!

I returned home with strict instructions for treatment of the Antiphospholipid Syndrome. My eyesight was still double and blurred, so it was critical that I start on Heparin, a blood thinner. Within two days, my headaches were GONE. I had no idea how bad they were until they were gone. My head was clear, I could think and my personality came back! It was a miracle. I tried to get into a Rheumatologist, close to home, for my Lupus symptoms, but the waiting list was eight months. I faxed Dr. Hughes to see if he knew any good Rheumatologists in Canada. He did and I will go to Alberta to see one in February . I will also see a really good Neurologist the same day. I am anticipating that appointment because I can’t wait to feel better and get back to myself.

I work for Camp Easter Seal, a camping program for people with disabilities of all ages in Saskatchewan. I am the Camp Administrator but unfortunately I have been on sick leave for two years with this flare. My eyesight is still double and blurred, but my Ophthalmologist is noticing new improvements since the start of the blood thinners. I still have major abdominal pain, fevers, fatigue, joint swelling, facial and arm rashes, hearing problems, inflammation in my lymph nodes, and I have recently starting gaining weight. All of this aside, I still am able to get up every morning and continue on, and I am so thankful that my Antiphospholipid Syndrome symptoms are getting better. As the saying goes “Slow and steady wins the race”.

I have been so fortunate in my journey with Lupus. I am so grateful for the people that have been put in my path; I don’t know what I would do without them. I also am able to help others. Lots of people are struggling like I was with symptoms of Lupus and no answers. To date, I have helped 25 people find a Rheumatologist that would diagnose and treat them. I am proud of the work that I am doing, and anticipating the work I will be able to do in the future. My best advice to all of you, either diagnosed or not, is to keep your chin up, be positive and reach out to others for support and encouragement. I am not a doctor, but through my experiences, I can go on and help others.

I know if it wasn’t for my family and friends that I wouldn’t be here and as positive and happy as I am! Take each day, and live it to the best you can. After all, isn’t that why we are all here? A special thank you goes out to everyone that has helped me in my journey.