Ok I saw the title of this post after I signed in to the forum and I automatically had to click it and read it. I didn't even read all the posting in this forum but enough to know all you guys are generally on the same path as far as symptoms with your CNS involvement.....I wanted to share my story and get an opinion from you all because as of yet I have not been dxd with CNS involvement but have thought ive had it since the beginning.
In 2003 at 15 I had my first seizure. No warning, just happened while I was waiting for the bus outside of my house before school one morning and just fell. It was grand mal like the other 2 ive had. I was put on carbatrol for 2 yrs and as a rebellious teenager(because no one was listening to what i had to say about my symptoms being anything serious)didn't take my meds right and had another seizure a few months after. I came off carbatrol in march of 2006. I was seizure free until this past january. However, at 15 along with my seizures I also had a very severe 2 yr depression which my parents and everyone blamed on my negative attitude towards everyone and being a teenager etc etc. There were times I would wake up so pale and weak I couldn't move. I would ache(ive had a leg ache that woke me up some nights since I was 7 yrs old). My hands and feet would always turn purple and in the heat I would always get this redness across my chest,nose & cheeks and arms. People chalked that up to embarrassment and just getting flushed. In 2007 I gave birth to my son at 34 weeks(after my water broke for no reason at 27 weeks & I carried him till then)he was in the hospital 3 weeks after birth. I pumped breastmilk for him and once he came home everything seemed to dry up so I stopped and switched to formula. After that I noticed that weakness/etc i described earlier when I was younger...except it got worse. There were times i HAD to lay down and sleep or I was going to fall in the floor. My son being premature didn't sleep well and was also on a heart monitor for the first 6 months of his life and had reflux etc so it def took a toll and even then everyone said it was because things were so hard on me having a preemie. In 2008 I started noticing this burning in my thighs. I had thought it was stemming from the ache I always got in my legs but one day I just noticed the burning in the middle of the day and was like something isnt right. I went to my PCP and she did tests all of which were normal besides being anemic due to severe iron deficiency...why...we dont know. I did end up asking her what could cause this pain? And one thing she mentioned was lupus..I looked it up and low and behold, a disease that fit every little single thing in my life from birth that could explain why I felt the way(s) I felt. I was convinced. So I went to a few drs locally who dismissed me as "normal" even after my ana's and cpk's started coming back elevated. Finally went to Johns Hopkins and received a diagnosis of UCTD w/SLE features. I was put on Naproxen, then plaquenil, then Neurontin, tried Cymbalta, was on allergy meds etc etc. I was a walking zombie due to the disease itself and the meds made it worse..nothing was better. ...Here's where the CNS comes in...I had an episode at school(college)one day last year where my tongue mouth and head/neck tensed up and went tingly. I had had the tingling in my hands/arms and feet/legs before but nothing like this. I had severe fogginess and it seemed like the room was closing in or something(very hard to describe). I couldn't speak but was texting a friend at the time and that was all I could concentrate on. I started having anxiety and I couldn't move. I finally did get up and ended up getting a friend to come by and take me to the ER. They tried to say it was angioedema(allergic reaction). I had a severe malar rash(im sensitive to flourescents which are everywhere, as well as the sun and even sunscreen..makes it worse). They gave me an iv shot of benadryl and prednisone and it made things better until the next day when it wore off and I had another episode sitting in the living room watching tv. It wasn't quite as bad which I figured was due to the prednisone Id had...so I filled my prescrip for the pred for the next 2 days and took that and it went away. I was due to get an MRI/MRA w/dye & an EEG(the er never did any testing for lupus involvement of anything and never did any tests for stroke, seizure,etc even given my history.)but then this past january I found out I was pregnant after having my 3rd seizure a week before. I still have yet to get the tests done. I have to set up the appointments. But everytime I talk to my rheumy or neuro about these things they go by tests and say since theyve been normal before basically "you dont have cns involvement." I have been on Keppra since I had the seizure. My daughter is now 9 weeks old and I stopped breastfeeding her around 6 weeks. Since then my symptoms are starting to come back slowly. Raynauds, rashes, fatigue, weakness, bruising,pain,etc. I am due to get a workup but what I need to know is this, if I get all these tests done and they dont show anything significant according to my drs, what then? How can I convince them of the CNS aspect? I know I have it, Ive heard so many ppl describe it and it fits me to a t. I am also being evaluated for possible IBD which can also cause CNS symptoms if it is involved with other autoimmune diseases...I am frustrated because I feel like Im not going to get the proper treatment if people wont believe me. Ive had the problem my whole life and cant take it. Plaquenil still isn't working and the only thing that ever put me into remission was being pregnant and I have 2 kids and I cant stay pregnant forever lol Any advice/suggestions?? Help! :/...Im sorry I rambled so much but I really want ppl to know my story and relate and feel comforted they're not alone as well try and find a way to convince the people that dont get it that it's real. I have been seizure free since being put on the Keppra but I still have nystagmus/eye twitching. I hope you all are well and thanks again. -Lupie Britt
*Lupie Britt*- Epilepsy Dx: 2003 & SLE Dx: 2009-Expecting Baby # 2! :)-Current Meds:Plaquenil-200mg 2x/day, Keppra-500mg 2x/day, Prenatal Vitamin- 1 pill/day, Folic Acid- 1mg 1x/day
*Due September 25th 2010*