CHRONIC TONIC posts on Thursdays at 9 p.m. EST, it is a place to share stories, advice, and information and to connect with others with chronic health conditions and those who care for them. Our diarists will report on research, alternative treatments, clinical trials, and health insurance issues through personal stories. You are invited to share in comments (and note if you'd like to be a future diarist).
Tonight's diary by: BFSkinner
Thanks for allowing me to talk about something near and dear to my brain and heart. For those of you that do not know I suffer from lupus, and as a result dementia related to the lupus. I thought that I’d provide a basic overview of SLE and the nervous system, and then talk about my specific symptoms and outlook.
Lupus is an autoimmune disease that can affect almost any part of your body, including your joints, skin, kidneys, heart, lungs, or blood. Different people have different profiles of the disease. If you gave me 10 people with lupus I would give you 10 different disease profiles. Some would have mild problems, some severe. Some would have no heart involvement, others would. Some would just suffer from one organ system problems, others would have no organ systems involved, while someone else could have multiple organ system involvement. For me, my lupus affects the nervous system and brain. Just like the rest of medicine, what I have is known by many different names: neuropsychiatric lupus (NP-SLE), neurocognitive dysfunction, or central nervous system lupus (CNS lupus).
Neurologists are my friends. Lord knows I’ve paid for several neurologists homes, vacations and cars based on how often I’ve seen them and the number of tests I’ve had run on me. You name it, I’ve had it done:
x-rays, brain scans (magnetic resonance imaging (MRI) and computed tomography (CT), positron emission tomography(PET Scans), Spinal taps, and even a brain biopsy.
The classical CNS signs of neuro-cognitive lupus are like a menu for me. You name it, I’ve had it. They include the following, all of which I’ve had and/or still have.
• headaches
• confusion
• fatigue
• depression
• seizures
• strokes
• vision problems
• mood swings
• difficulty concentrating
I’ve gone beyond this and advanced into something known as 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. I’ve only had one such outbreak and am now controlled, but this is the big elephant in the room for me. I have dementia related to my lupus, due to vasculitis.
The good news is everything is on hold/in check at the moment since I am on a steady state of medication. I take 15 pills in the morning, 2 in the afternoon and 4 at night. Not each pill is for the CNS portions of my SLE but they are all for problems related to my SLE in some way (For example I am on four meds related to the heart attack/problems I had due to my SLE in the past).
I was in a poop-boat load of trouble about a year ago since I was getting worse in a catch-22. I need to be on all my meds to stave off problems and hold things in check for as long as I can. The problem was I was not taking my meds all the time since I was living alone and trying to work full time, take care of myself full time and live a normal life full time. Since I could not manage all three my meds did not always get taken so I ended up progressing downwards fast.
But I got lucky, I now am living in an assisted care facility in which my meds are brought to me three times a day, so I do not need to worry about not taking them. I also have two meals a day fixed for me so not eating is not a problem anymore. Before I did not eat all the time for the same reason I did not take my meds all the time --- I knew I needed to, I wanted to, but I could not ‘initiate’ the actions…I just could not start the process. I needed someone to help say “Hey dumbass take your meds, here they are” and hand them to me, and I was fine and would…if not I’d never get up to do so myself often enough to ward off getting worse.
So now that I take my meds all the times everything, cognitively, is held in check. There is no ‘cure’ no ‘panacea’ and eventually the meds will not work as well and I will fade out. I know this and so I keep myself busy and try to keep my brain as sharp as I can, take all my meds all the time and just pray for the best. There are still differences now, things about me that are not as ‘good’ now as they were before. I can’t do some things like I used to. I get confused a lot easier, and at night especially my brain is one giant mush-pit. I have paranoia at times and other fun stuff. But things right now are pretty good. I do not plan on going anywhere anytime soon.
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