Here's my back story:

Have had lupus since June 2003.

Have protein S deficiency and other fun stuff too.

Lupus Blood work ALWAYS come back fine.

Allergic to all steroids (psychiatric reactions). Husband has complained for the last few years that I have been communicating worse, but friends say I'm fine. I thought he was just being a jerk (haha!)

Multiple flares, but here is the important one. Major flare in winter of 2011 and I started to have these "short circuits". I had muscle weakness and loss of feeling in my hands and feet. Neurology said there was no neuropathy from EMG, BUT I did have abnormal wave function (I think that was it). The headaches also happened. Command of memory and speech was impaired and I was couldn't find the right words. Dr pawned it off to having 2 young children and me being a tired young mother (29 yrs old at the time)

Muscle biopsy indicated inactive muscles even though I worked out (with a trainer) 2-3 times a week. Dr didn't investigate further. (Although now I wish she would have. At the time I was tired if all the testing). She prescribed gabapentin and covered any nerve numbness symptoms I had.

Fast forward to Sept 2012. Lupus had been fine and only minor/mini flare hiccups. Started noticing vision loss so go to eye dr. Noted true loss an sent me to retinal specialist. All was fine. Ended up making me stop wearing contacts and inflammation went down a vision returned (albeit not perfectly, but better than before).

Lupus (i thought) began simmering in other ways (fatigue, pain, stereotypical lupus ways). I ended up being put on progesterone for endometriosis pain. It caused a major depressive episode (I'm already on Zoloft for bad PMS) and i stopped the medication immediately. Around Thanksgiving I began to "short circuit". Hubs would say stuff to me and I wouldn't remember the conversations or process it.

I rallied and got through the holidays but since my progesterone meltdown I didn't feel mentally intact and felt like a flare was brewing. Family got sick with the flu and I ended up being caregiver and that kicked me over into this current major flare.

Vision started messing up again. Headaches.
Rashes.
Horrible fatigue.
Can't feel my fingers and toes. Everything tingles when I wake up.
Comprehension and word reaching. Everything seemed spelled wrong. (Thank God for autocorrect)
Joints horribly swollen (had to get all jewelry off)
Feelings in hands and feet are gone again.
Raynaud's.
Hair loss (including eyebrows and lashes)
Back pain.
Concentration missing.
Dizzy.
Fever.
Weight fluctuations.
Mouth sores.
You get the idea.

Go to the rheum she says I'm in major flare and doesn't know what to do because I can't take steroids. She wanted to do a steroid shot but can't. *I* have to suggest meds like Benlysta or Cellcept (had bad reaction to imuran and Sulfasalzine in past). She says those are great ideas and we'll see what blood work says.

As usual, blood work is fine and only trace protein in urine. Dr emails me saying "Maybe low dose of a imuran. If not go see my internist". I was upset. I KNOW this is not normal. I've had it almost 10 Yrs I know what it feels like to flare. Something isn't right. It feels like 2 yrs ago, but worse.

So I go to a second opinion. Had appt and I could barely understand what was happening. In fact, I forgot to tell him other meds I was on, what med issues I've had, and I misunderstood what words he said (ie: when talking about pleurisy he asked if I hurt with exertion and I thought he said exhalation. So I said no. Only the next day I realized I thought he said something else!). I had to email the nurse with everything I screwed up in my appt. making me feel like a total .

He also decided to do neurocognitive testing. He asked me questions and I felt so stupid because I misunderstood the questions!! (I know I am very smart and have never felt this handicapped). He is also having X-rays of all my joints.

After reading a bit I am starting to get more mad at my first rheum. She should have done the cognitive testing last major flare. This is not normal. Collapsing and being dizzy is not normal. Losing vision and everything being blurred. It feels like I can't see....but if I concentrate....I realize it's actually clear. Does that even make sense?? Messing up how I speak (my sentences get all jumbled and the words end up in the wrong places). Stuttering or tripping over words is not normal.

THEN found out on Wed older half sister (I never speak to her....haven't in over a decade) has MS after a friend mentions my symptoms are starting to seem like MS and I mention it to my little sister

At neurocognitive test, the dr immediately told my new rheum that with my language and verbal issues and my sister'a history that I need a brain MRI. I get a brain and c- spine and t spine MRI on Monday. Another emg is scheduled for thurs.

I feel like I'm losing my mind.

Oh and lupus blood work is clear....again. Only elevated igM and low C3. (And low vit d at 30 so not too bad)

More I learn the more certain this is it and the more all of this makes sense for the last few yrs. If it is MS, I can bet you all of my money, that that's been my problem for the last few years, but they've all been stuck on lupus!

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **