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Did You Know Mondays = Autoimmune Epilepsy

Did You Know Mondays:

One Of My Types Of Epilepsy is GAD65 Autoimmune

How is autoimmune epilepsy(AE) diagnosed?

When my epilepsy took a turn for the worse my Mayo doctor presumed I might have an autoimmune issue, so he ordered extra tests. I already had many EEGs, MRI and basic blood tests, so we turned to a spinal tap. The spinal tap(Lumbar Puncture) to look for certain antibodies in the cerebrospinal fluid (CSF) which shows if surrounding the brain.

My tests verified that I had glumatic acid decarboxylase (GAD65) positive both in the serum and the CSF. We were in hopes it was discovered early enough to be treated and my epilepsy meds would go back to have my epilepsy basically under control. The other reason you want it caught early was to prevent any further injury to brain cells.

How was I treated for my GAD65 Autoimmune Epilepsy?

Based on my type we started out with a strong steroid treatment given via intravenous immunoglobin directly into my blood system, also known as IVIG treatment. (see picture above during one of my treatments).This is stonger vs a pill treatment to stop the disease from spreading quicker and in the hopes back to my basic seizure treatment.

This treatment is known to be very intensive and the body cannot handle it to be done for long periods of time. My IVIG plan was to go from daily treatments for a week to 3x a week, down to 2x a week, and then once a week. This treatment is very hard on the body, so it has to be done in a step down process.

Originally the IVIG treatment brought down my numbers and I was doing pretty well with changes of my meds, and eventually the RNS implant.

Unfortunately; over time the numbers went back up, and currently still at a state with high numbers. I recently had bloodwork done, and we shall see if my immune system has anything else going on. Pending those results it could explain other complications within my autoimmune system. We did discuss at my last appointment trying the IVIG treatment again for a short period of time, pending what the bloodwork shows first as well as my medication adjustments currently. Right now I am ready to try anything again, I just want seizures controlled!

Any Questions? Please remember this is my individual epilepsy case and everyone is very different and varies on treatments.

Also, I am not a doctor, these are my words.


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diana
Apr 25, 2023
Rated 5 out of 5 stars.

Keep sharing your journey!💜

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Marissa DeVaul Parmer
Marissa DeVaul Parmer
Apr 28, 2023
Replying to

I will definitely keep trying to be completely honest while spreading Epilepsy Awareness & hope it also helps others.

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