Re: Oldie but Newbie to this group/WELCOME FRAN

[Guest guest]

Welcome Fran,

Sounds like you fit right in here....You have certainly been through a lot with your Lupus, and as a lot of us have done......after your diagnosis, realized that you have probably had it most of your adult life, just undiagnosed.

My name is C. (aka) Lonewolf. I am 60 yrs old and was diagnosed with Lupus in 1997, after falling into a coma which lasted for 10 days .....after coming out of the coma I was hallucinating BIG TIME....auditory, as well as visual .....It was VERY scary....I thought my nurses and doctors were vampires, etc. etc. etc. .....so I can certainly relate to the CNS symptoms .

I'm sorry I can't answer your questions about IVIs but someone here will be able to give you some answers I'm sure.....we are a vast and varied group with symptoms to match.

My Lupus is in remission now....but I was recently diagnosed with Fibro. and Sjogren's Syndrome...and am allergic to a vast Number of medications....I am currently fight an allergic reaction to a new Antidepressant my Psychitrist had put me on .....trying to get it under control with my Psychiatrist AND my PCP on vacation till the 8th of August.

Anyway....welcome to the group, I look forward to getting to know you better.

Oldie but Newbie to this group

Hello Everyone,Please allow me to introduce myself. My name is Fran, married to agreat guy for close to 25 years. We have 2 cats who think they're human.They've trained us well -- over the past 15 years.Normally I would refrain telling my history with SLE because it cansound so melodramatic and unbelievable to those unfamiliar with the disease.Without a doubt I know all of you can relate to this and even more.In 1987 I was diagnosed with SLE (although in retrospect have hadsymptoms since my teens). In July of that year, experienced an "out of body"episode. This CNS episode lasted 3 years and let me tell you were the darkest momentsin my life. Hearing voices, seeing colors, no sense of time and unable to makelogical decisions or choices. I remember standing in front of the tuna section at alocal supermarket for 15 minutes trying to figure out the difference to each. My lupusdoctor put me on high doses of prednisone and cytoxin.This lasted 4 years until my kidneys failed. Cytoxin was immediatelystopped although it made great improvements to my CNS. Since my diagnosis I have had kidney failure (although miraculouslyand I do mean miraculously) after 3 months on dialysis, my kidney functionreturned, although with some damage. This preceded a hysterectomy followed by precancerousspot on my bladder. Blah, blah, blah, blah… OK so here I am today - 51 yr old (where did the years go?) andI'll be starting on IVIg therapy come Tuesday. It's intravenous immunoglobin – 4-hourdrip on 5 consecutive days. This is my initial dose. Then I'll receiveone drip every other week for 6 months. The reason for this treatment is because the doctorsfound an additional lesion at the base of medulla (at least they keep findingmy brain) and palsy-like neuropathy in my left leg.Has anyone been on IVIg? Has anyone heard of IVIg used for lupus?This group sounds like it has a spirit of love, frankness, compassionand support! A place where I belong… Thanks.Fran"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies