← Return to Living with epilepsy - Introduce yourself & meet others

Discussion
Comment receiving replies
@kanaazpereira

Hello @stayfree,
Welcome to Connect. From what I've researched, a high level of GAD65 autoantibodies associated with autoimmune diseases including Stiff Person Syndrome (SPS) and Type 1 diabetes (T1D). Here is some clinical information from Mayo Clinic: http://mayocl.in/2hfBvfY

@sall, @XhaustedBsue, since you have experience with Vimpat, could you provide some more insight for @stayfree?

Jump to this post


Replies to "Hello @stayfree, Welcome to Connect. From what I've researched, a high level of GAD65 autoantibodies associated..."

Thank you. Any information about weaning off Vimpat would be helpful. Vimpatc has been a nightmare for me. As i said, everytime the MDs have attempted to wean me, I have auras leading to seizures. I have been introduced to Lyrica, neurontin, lamictal. Name it. They have tried it. I end up with unsteady gait, blurred vision, dizziness. Without medicine i have absent seizures. Although i have a abnormal mri, my neurologist think the GAD65 has something to do with my symptoms. I don't know at this point.

Hello @stayfree
I have also been on gone down the rough and bumpy road of finding the right medication and the right dose and the right time of the day. Many seizures, ER visits, waisted medications that I can never take again and a lot of waisted money!!!

Now those days are over!!! Now we have the capabilities to prescribe the right medications, right dose, right time of day. Eliminating the adverse reactions, waisted time and money. Here is a link explaining a simple test you only need to do once in your life. Pharmacogenetics testing or also know as PgX.
http://mayoresearch.mayo.edu/center-for-individualized-medicine/drug-gene-testing.asp

When my Mayo docs weaned me the started me on trileptal before weaning me off the other medicine. We weaned 1 dose at a time on 1 medication at a time changing 1week at a time until I was able to finally be on just the trileptal. I had an occasional aura but no seizures. Now seizure free for almost 10 years with a break through a month ago but back on track again.
Remember: weight changes everything. So if you are have weight changes tell your doctor immediately.

Prayers for seizure free days
Dawn

Thank you, I will look right into that. Have a blessed day.

Has anyone been diagnosed with stiff person with any blood test other than gad65?