Does this clinically sound like MS? To begin, I had a craniotomy in 2014 to remove a benign brain tumor from the left frontal lobe that was causing vision loss, the worst migraines I’ve ever had, and many other issues. Since 2020, I’ve noticed random nerve pain in other places on my body outside of my head. Random hot spots that feel as if someone is holding fire to my skin. Not hot to the touch, not red to the eye, but hot from the inside out. These hot spots are in the middle of my right buttcheek, top of my right foot, on my thighs. Randomly, I’ll get zaps of nerve pain down the middle of my back if I move my head down, like touching my chin to my chest. The muscles in my legs and thighs spasm, my feet throb and tingle to the point of tears, my feet and hands throb and go numb. It hurts to walk. I have night sweats, cannot empty my bowels (it’s as if the nerves of my colon/rectum are dead), the eye pain when I move my eyes. Very blurry vision. Double vision. Tired regardless of the amount of sleep I get. Slurred speech, very bad heat intolerance; the list goes on.

I saw an MS specialist one time in 2021 when it felt like my entire body was attacking itself. He found a lesion in the periventricular area of the brain, which happens to be the location MS is prone to be found. He said it’s been there and always has been, just wasn’t caught on scans from 2014. He did a lumbar puncture, but I had no obands. He said had I not had the tumor removed in 2014, I would have a clinical diagnosis, less the protein in the spinal fluid since I have symptoms and two tumors. He tested the strength and quickness of my legs; my left leg showed slowing and didn’t respond as quickly. He sent me to see a psych when I mentioned how bad my memory was and how badly my brain fog was making my everyday. It’s caused me to leave on stoves, ovens. I’ve even forgotten to take care of my hygiene. I saw the psych as asked, who diagnosed me with conversion disorder, all because I cried when he touched a few nerves about an abusive past I had. You guys, I’ve been to other mental health specialists who have said they can’t diagnose me with anything and they know something real is going on. So, I gave up trying to get answers. Eventually, the symptoms either went away or were so normal I just ignored them. This was two years ago.

Over the last week, it seems I’m having a bad flare of something. My body is attacking itself again. I haven’t been able to have a bowel movement all week, things to help with that aren’t working. My stomach is bloated like I’m pregnant. The nerves all over my body from top of head to toes are randomly zapping me, causing me to cry out loud again. Sometimes the zap is so strong, it makes me fall. My legs from the middle of my calves down are painfully tingly. There’s a spot on the inside of my right foot that burns like fire. I actually caught a skin color change this time. When the pain stopped, the red went away. Last night, my left foot felt like a block of ice while my right foot felt like it was on fire. They were both red, but very different in temperatures. The muscles in my legs spasm. It hurts to walk again. My eyes are very painful to light. The nausea, can’t eat, can’t drink. It’s like my body is short circuiting.

I see my neuro on Monday. What should I ask for? A better work up? The longer this goes on, the worse it gets.

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