Diagnosis of CNS involvement....need info please!!
I'm Karen, in Gadsden, AL. I've just recently been diagnosed with SLE, specifically, the CNS part of it. Having scanned through the topics, I was unable to find anything concerning this.
Please, if anyone has this problem, let me know. Obviously, they are still performing tests to determine the severity of this, but the CNS alone has me very frightened. I've been told not to drive, lift anything, or do anything in the sun, as it could cause serious problems (the driving alone could cause me or someone else's death).
I look forward to hearing from you all, and thank you for forming this board.
Many hugs, Karen. I'm glad you found the forum so soon after your diagnosis, hopefully SaySusie and others who have more knowledge about CNS involvement will be able to chime in shortly.
It sounds like they're still doing tests and you'e in the middle of all of it right now. Start writing down your questions, make 2 copies andgive one to your doc when you go in. Expect answers to every question - you deserve the time and the attention. Even if the answer is "we don't know yet, we will be doing more tests"
As far as the sun - no matter what form of SLE you have, sun can be problematic. I wear a BIG hat (hence the moniker) every time I'm outside if the sun is above the horizon. Sun up to sun down. Cloudy or sunny days. Should look for a 4" brim, minimum. You're in a FAR sunnier place than me, be sure to pick hats carefully! you don't want to be able to see through it - no loose weaves.
Keep covered - RIT dye makes a product called SunGuard that I swear by - instead of spending $60+ on ONE long sleeved sun-protective blouse, I wash my long sleeved blouses per the package directions and they're good for 12 washings. TAkes the SPF up to at least 30. Wear sunBLOCK as well, and reapply per directions.
Sun can cause us to go into a flare - that is a worsening of symptoms, fever, rashes, other less enjoyable things as well.
Lupus can be mild, it can go into remission, it can be a condition that we can live with successfully for many many years. Yes, it can also be debilitating and deadly. But not always. Have hope,at this point hope is a wonderful thing. We're here to listen, to offer support and to help with information when we can.
Many hugs dear -
I've never heard of that type of RIT dye, but I will check that out. Now that you mention it, having lived in the south all my life, I've always had far more problems during the spring, summer, and early fall than the rest of the year. I've just never really noticed it, but it's true, when I think it through. My hubby loves fishing, and always wants me to go out on the boat with him when he's home (he's a trucker, so that's only once every couple of weekends). Guess that just came to an end, huh?
I found the board by doing a search for "lupus support groups" on Yahoo. Boy, was I shocked......I had no idea that there were so many online. I'm still trying to find one locally, so that I can meet some others face to face, but so far, nothing. Of course, I've only been searching for a short time, so who knows what else will come up?
Yes, there are still some tests they are doing. They haven't started me on anything for the illness yet, but I do have some pain meds to help until they have the rest of the results in. I'm somewhat reluctant to take them, as I'm worried about developing a dependence or tolerance for them, especiallyif we are looking at long term usage.
Oh well, we'll have to see how they wish to proceed, and go from there. I guess that's about all I can do.
Yes, there are a lot of support groups online! I looked around for a while before "landing" on this one and one other. It is nice to chat with others who truly understand.
On the pain meds - I resisted for a while as well when I was first diagnosed. But when I had a bad spell I did take naproxen for a while. What I learned? That pain was about 1/2 of my fatigue. I never realized how tiring dealing with chronic unending pain can be! I did not develop a dependence, and after I started on plaquenil I eventually stopped the meds - now I rely on tylenol or aspirin when needed. If the higher levels of pain came back, I'd go back to the meds - they're worth the pain free days and the ability to function more normally.
Changing my diet helped the pain as well - but I'm not sure if that's something that affects everyone or just worked for me. I've cut out meat, though I'll eat fish (especially wild caught salmon) once or twice a week. I try to eat more whole foods and organic foods now.
Fishing? Ah, my idea of fishing was always an unbaited hook, a good book, and a big tree to lean against. Philosophical fishing.
I found the RIT Sunguard at a local hobby/sewing store, they didn't have it at my local grocery. It was about $3/box. Worth it!
I'm with you on the reading.......I usually always have something within reach 24 hours a day. I can't go to sleep until I've read at least 3 chapters from whatever I'm into lately. This will probably sound a bit silly, but right now, that happens to be the newest Harry Potter. What can I say.....even at 40, I'm still a kid at heart!!
I do enjoy fishing......not like my hubby though (he's one of those "artificial lure" kind of guys, whereas I was raised with worms, crickets, and a river bank). I think I'll start looking around for places that are well shaded......maybe that would satisfy us both. Either way, I think I'm going to marry a case of sunblock......I don't think I'll tell my hubby about it, either (HAHA).
Yeah, I'm having a better day today. I did take the pills last night......I think I actually slept about 5 hours (which is pretty good for me, I average about 3). You're probably right about pain being half the fatigue problem. I've just ALWAYS been reluctant to medicate for any reason, so that's a bit hard to overcome. I guess with age comes responsibility......if I need them, I'll take them.
Thanks for your forthright answers, HatLady. I am going later today to buy a hat.......I promise, no loose weave.
Oh! I haven't gotten my hands on the latest Harry Potter yet! I've read all of them, and seen the movies. LOVE them!
I understand your reluctance to medicate... I really do. I tend towards supplements. Always check with your doctor though!
For pain and inflamation -- fish oil. Also turmeric (yes, the spice) I take a teaspoon a day mixed in with ground flax (also for omegas and for fiber). An acquired taste, to be sure! But over time they seem to have helped the pain as well.
Hugs, and I hopeyou find a wonderfull shady tree near a lake full of BIG fish!
I just got diagnoses with lupus of the brain. My doc thought it could possibly be MS and had me do a lumbar puncture. Finally got all the tests in and I have to do IV cytoxan therapy monthly for the next 6 months. I tried to delay as I'm training in AZ for 6 weeks and honestly don't have time to be sick! She said it's extremely serious and left untreated, could have a stroke or coma. Did my first therapy last Saturday and it was not too bad. A bit tired and still have headaches. Started having headaches about 7 weeks ago. It all started with seizures in April and by the time my rheumatologist got back from vacation and I was started on anti - seizure meds, I started having severe headaches. Makes it hard to concentrate on a new project but I pray daily and try not to overdo it. Let me know how it goes and good luck!