I just learned how naïve I've been thinking it was so easy to get a diagnosis and move on with my life. I'm still looking for answers if anyone has any thoughts/suggestions they would like to add.
Feb/Mar saw my PCM for TERRIBLE headaches. Just all day, wake you up, medicine doesn't help headaches. Dr. scheduled an MRI of the brain. The morning of the MRI, I collapsed in the waiting room. I got up from my chair to walk to the bathroom. Felt "funny" and my left leg started wobbling. Lost all strength and then shortly after the right leg lost strength too and I sagged to the floor. Never hit my head. Never lost conscious. After getting help, had my MRI (they added spine to the order). Had my testing and then left. Hospital called me 30 minutes later and told me to go to a stroke center because my findings were "concerning"
Long story short- I've been extensively tested since April for everything they could think of. It looks like a TIA but not, it acts like MS but it's not. My heart is amazing and it's not Lyme, Lupus or all the other things. I was low in Vitamin D, but that's all they could find.
I have a brain lesion in the caudate (egg shaped). It's healing/shrinking, so that's good. But that first month I had ALL kinds of issues with my left leg going wobbly on me randomly. I even bought a cane. I feel weird right before that happens, almost like the blood drains out of my head- which is a warning sign the wobbly leg is going to happen. If I keep walking it's spastic or I lose all strength. It's really fast, within a few minutes, I'm myself again. But then my muscles feel drained for hours afterward. For one month is was pretty bad with the wobbly leg issues, and the fatigue was pretty severe.
Then it sort of stopped for awhile. Went in for more testing. Saw 2 MS specialists who don't think it's MS. Saw a general neurologist who thinks I need to go to the Mayo Clinic and see a MS/Autoimmune Doctor.
Now I'm anemic out of nowhere (blood was tested in March and that wasn't a problem then). Then my blood pressure started creeping up (never had a problem in my life until last week). The my period started getting weird (ultrasound coming soon). The leg issue started up again for a week and then quieted down again. Intermittently have a day of just exhaustion where my leg feels like I ran a marathon even though I didn't do anything.
I feel like a leaky pipe. Just as we check one thing off the list, something new pops up. So what do you all think? Anything sound familiar? Thank you in advance!