Story about Lupus , Rheumatoid Arthritis, Fibromyalgia, Multiple Sclerosis.

My journey thus far

Jan 29, 2016


 In 1991 I had an intestinal virus after that I started having multiple health issues. I was never really sick prior to that. I had horrible IBS for 15 yrs. In 2006I started having extreme joint pain. I saw multiple doctors, had multiple MRI's and x-rays, and labs drawn. In 2008 I was finally diagnosed with lupus and fibromyalgia through blood work and physical examination. A few years ago I was diagnosed with rheumatoid arthritis as well. In 2015 I got up one morning and my legs just gave out and I fell. I have been barely able to walk since. After the first of the year I had another fall. Once again my legs had just given out without warning. A few days after the fall I suffered a stroke. It has effected mainly my speech but I have had some problems thinking. Sometimes my thoughts seem like a bunch of tangled up wires esp if I get upset or stressed. I also do not seem to be able to control my emotions as well. My neurologist says it was a brain stem stroke. They could not do an MRI because I am very clausterphobic and the hospital did not have an open MRI machine. I have been have migraines on and off for a year. With the loss of leg function several months prior to the stroke several of my doctors think I have MS. They are testing me for that now. They do not believe it is lupus related,but they are not sure. I have been in chronic, horrific pain for about ten years now. Every joint in my body. My knees seem to be the worst. I have rheumatoid and osteoarthritis in both knees. My hands hurt pretty bad as well. I was very athletic and physically fit prior to all of this. I ran five miles a day and cycled that much as well. I also played sports and worked out at the gym. My doctor believes I got lupus from the intestinal virus I had at 19. He reported it to the cdc back in 2008. I had two other friends that had the same virus I had at the same time. They both have lupus and fibro now as well. I had fairly minor symptoms until 2006. I was the last of the three of us to start showing major problems. The doctors believe that could be due to good diet and exercise. I have had multiple issues with the lupus; mouth/ nose ulcers, photo sensitivity, joint pain, muscle weakness and cramps, hair loss, weight gain secondary to steroids, thyroid issues, cushings secondary to steroids, edema, loss of teeth, dental caries, insomnia, migraines, pleurisy, pneumonia, anemia, severe vitamin d deficiency as well as severe vitamin b deficiency, dizziness, anxiety, depression, hypertension, hypomagnesemia, blurred/ double vision, and I'm sure there are some others I've forgotten. So now I wait and see about MS.  Thankfully I have a very supportive family. I was a RN at Integris but I have not been able to work since November and I really started having problems with my legs back in summer of 2015. I began not being able to work more than 24 hours a week and I had to space my days out. It was taking me longer and longer to recover from working a shift. There is my journey so far...

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2 comments
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That's really rough to read, but you are so strong for working despite the uphill battle you were already fighting. I applaud you. 

Commented 7 years ago Flora Langel "Naanad" DeKock 45
0

Have a blood draw for GAD65 antibodies.  Vanderbilt was checking me for type 1 vs type 2 diabetes and stumbled upon  Stiff Person Syndrome as the accurate answer confirmed (several times they rechecked) with that one inexpensive test.  It began to unravel all the other wrong diagnoses....  I have 8 autoimmune diagnoses now also after lots of healthy choices and a demanding career and life.  

Best advice from 2 MDs who have SPS personally... Vegetarian worked for one ER doc and lots of exercise helps the anesthesiologist....hope this helps you.

Been There

Commented 7 years ago Joni 10

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