03-08-2007, 12:13 AM
I went to the doctor today because I am sick again; had pneumonia at the beginning of the year. We talked at length about the realities of my going back to work. I wasn't surprised at her comments and the "speech" that because I have a few good weeks doesn't mean I'm strong enough for work. She said that the information that occurs in my brain, kills cells - thus, the memory problems, speech, etc.
Is there anyone here with advanced CNS lupus, and how to cope, what therapies are working, what should I expect, etc. Understanding that my kidney function is decreasing, and the brain undependable; I'm scared.
Anyone with experience or knowledge? I'm not finding out too much on the web.
So tired, need to run for now.
03-08-2007, 12:31 PM
Browneyedgirl, have you done cytoxan yet? I found that my CNS problems improved a lot after several rounds of the cytoxan and pulsed IV steroids. Prednisone alone just wasn't enough to do it for me, and I couldn't take cellcept.
I have kidney and neuro involvement both - the neuro involvement is from the lupus and from antiphospholipid antibodies. So therapy for me includes blood thinners, the cytoxan and IV steroids, antiseizure meds, etc, I've also done plasmapheresis and IVIG when the symptoms were really severe, but it's too expensive for routine treatment. It meant going out of state to find a neurologist experienced in treating CNS lupus, but it's worth it to find one.
Has your doc suggested any additional lines of treatment or therapy? Do you work with an occupational therapist?
03-08-2007, 01:24 PM
hi there dearie :)
my story in a nut shell:
i was diagnosed w/ reg lupus in '04, then cns just in oct '06. i had been having problems w/ memory, balance, and coordination early last yr, but just didnt pay much attention. looking back, i had really been in denial.
then i had a sezure in oct and it's been a interesting everysince! i had sezure in oct and am suffering from short term mem loss (i cant remember what we had for dinner last night, or most converstions-i have to right everythin down), walkin and balance is even worse, and severe speech and aphasia (which is why i dont spell words or say things the right way, it takes me FOREVER to right or type things!!).
how to cope?
well, it's truly day to day browneyed girl. i do my darnest to stay positive, which is really hard as u kno! i dont alway do. i look at how my life was, and i miss it so much. however i always liked challenges, so, i decid to make my 'new job' to figure out how go on with this new life. there really is a reason. yeah, i get so dag gone tired of being perky about the whole d*@% situation. i go head and sit on my pitty potty, but then i get up and flush! teres still so much i (we) can do! i still woryy about my little 5 yr old ladybug, and dear hubby. he has so much on him, and we're 'young'. but we dream and laugh ALOT! we've got alot on our plates. we all do. i jus rember it can be much worse!! comforting, right :lol:
therapies i try?
we are trying differnt med's for my sezurs (nurontin-which wears off, and now lyrica- i too scared to try phenobartol :? ) which, to me at least, is the biggist problem because i cant drive if i having them. and cytoxan w/ rituxan infusions (which really do help!) along with all the other 'lupus' meds - plaqinel, prednisone, etc... we also do accupuntur, breathing meditate too. but that's it. it can be fustration because i want for more to be done or happening. i am thankful because i come a lont way. wen in oct i could not speek or walk!! i have physcal, occupation, and speech terapies and am doing so much better. maybe not look like it now, the way i sound now, i am not feelin well andam tired, so my faculties get week.
so, this cns lupus stuff, well browneyed girl, i wish i could tell you help you more :? i may not be best sample of how to come out of it well, but i (we!) will get thru it! it not going to beet us :!:
hang in there, be well :wink: