I don’t want to complain and bemoan my situation – that won’t make it better. In fact, it will up the stress and kind of literally make things worse.
But…
I’m so tired of this! I’ve been dealing with these weird symptoms that are neurological, neuro-muscular, gastric, muscular, psychological, cardiovascular, and endocrinological. Woot. And….(drum roll) no one knows the why/when/how/what – double woot!
I call them “episodes” – the symptoms didn’t start out severe, but it’s all gotten progressively worse since May 2023.
What happens? It varies, but I will suddenly become physically weak and fatigued (out of nowhere). My speech becomes super sluggish and sometimes I can even form words. Sometimes my heart rate and breathing increase. Often, these symptoms are all precursors to muscle spasms that often start around my abdomen and quickly move upward…my chest, neck, and sometimes jaw all lock up and I can’t breathe.
I’ve never passed out, but my husband has always been here to press on my chest and force the spasm to stop enough for me to breathe (then everything locks up again). Heat used to help, but now it only stops with drugs.
I was referred to a neurologist who specialized in weird cases/autoimmune/ neuromuscular problems. She ordered 75 labs, 6 MRIs, a neuro- psych eval, and 2 EEGs (1 lasted 3 days)….and nothing! My brain and spine were normal, and EEGs showed no seizures.
The only clue was from my GI specialist who diagnosed small bowel Crohn’s. Apparently if the inflammation is severe enough, it can cause neurological symptoms. The hard-to-see neurologist who was supposed to be super thorough was done – she didn’t order nerve scans or dig any deeper. She was done being thorough.
I started Crohn’s infusions and the episodes actually stopped. Big YAY. Then my GI ordered a CT with barium contrast…I made it halfway through the barium solution when spasms started. Bad this time. I was rushed to the ER and given Valium (what makes the spasms stop).
That was 12/28…I’ve had multiple episodes every day since. EVERY.DAY. I have a new medication to help the spasms, but it doesn’t help my nerves which stay tense all the time. My next infusion is in 3 days and I hope that helps again.
My husband is kinda done spending money on tests and doctors. Me too. But it’s also frustrating not knowing what is happening to me…not knowing what triggers these things, and how I can help. We’re just trying to deal.
Plus, I’ve gained weight – extra annoying because I worked so hard to lose weight AND had a tummy tuck last year to remove all the extra skin.
That’s it, I think. For now.
Pen in Motion 