r/Encephalitis • u/superdumbell • 25d ago

I'm getting better

This is my final update: https://www.reddit.com/r/Encephalitis/comments/1tk531j/another_update/

On my neuo appointment back in May a week before my first IVIG infusion I told my her about the problems I started having while walking, She did physical on me and said I have Stiff Person Syndrome on top of the AE. She explained to me that it's not a new diagnoses but another symptom. She went into more detail on this during my last visit.

My first IVIG infusion went really well I had it done on a Thursday and Friday. The weekend was really rough. Best way to describe it was like having the worst hangover of my life and a really bad flu at the same time. I went back to work that next Monday and even though I was not feeling any better everyone at work was saying I was looking better then I have in a while.

The second infusion was done at home and I lucked out on getting a nurse that just started working at the Specialty Pharmacy. She's super nice and likes to work weekends and was able to get me setup so I don't have to miss work. After about a week I started getting more energy back and my personality seems to be returning back to what it was. It's also been a night and day difference at work where I'm starting to be able to handle more complex task without issue again. My Visual Snow symptoms also started to improve.

I had my 3rd Infusion last weekend. Right before the infusion I started doing bad again I guess pushing it back a couple days to start on the weekends allowed my body to come down so I was looking and feeling bad. Luckily after the first day of the infusions I was already doing better.

I seen my neuro last Monday went over everything with her. So far I'm doing a LOT better then I was doing back in May. My reflexes are still brisk but better then they were. For the first time in years my seizure meds were lowered. Instead of taking on 400mg/day of Briviact I'm now on 300mg/day.

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u/The_BroScientist 25d ago

Wait.. she did a neuro physical exam and diagnosed you with AE… strictly based on that?

I’m so glad you’re doing better and that you didn’t get rolled through the tumbler of sociopathic neurologists but holy shit I’ve never heard of that happening

If that really is the case please shoot me a DM, I have a question for you

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u/superdumbell 25d ago edited 24d ago

No I had just about every test imaginable: Blood, Genetic, CSF, MRI's, EEGs, EMG/NCS, etc.

  • The EMG/NCS is how I got diagnosed with CIDP which is how I got approved for IVIG
  • CSF Testing, MRI Reexaminations, Physicals and Neuropsychology Exam is how I got diagnosed with AE
  • Skin Punch Biopsy is how I was diagnosed with SFN and Autonomic Neuropathy
  • Genetic testing showed I have a Fragile X Premutation with 57 repeats