My story
Hi everyone,
I recently found this group, and I was surprised to see how common these symptoms are—the same ones I’ve been experiencing. I feel really sorry for everyone dealing with similar issues, but at the same time, it helps a bit to know I’m not alone. My story is a bit long, but I’ll try to summarize it.
It started about 8 years ago, when red spots appeared on my skin. I was given antihistamines and steroids. Around that time, I developed some double vision, so I was kept in the hospital. They diagnosed me with meningitis, gave me medication, and then discharged me. However, around that time I also noticed small twitching in my tongue. No one I told had ever heard of anything like that. I saw several neurologists and underwent thorough examinations, but everything came back negative. They explained it might be a residual effect of the meningitis.
Later, these twitching sensations spread throughout my whole body. I also visited infectious disease specialists, where I was diagnosed with a Bartonella infection. I received treatment again, but I somewhat felt like it was prescribed just to reassure me, not because they truly believed it was causing my symptoms. I’ve seen many doctors in different specialties, but all my test results keep coming back negative everywhere. Of course, I’m glad about that, but I don’t want to accept that this will stay like this forever.
From my most recent ophthalmology visit, I was told there might be a local issue with my eye, so I need special glasses.
Another thing I find strange is that there are periods when I’m completely free of twitching for days or even 1–2 weeks, and other times when it’s quite frequent. What could this depend on?
Thank you very much if you’ve read all of this! I would really appreciate any advice. If you have suggestions on what I could take or what might help, please let me know.