Let me first say I have the MOST wonderful hubby, as he has worn #PURPLE daily since November began to bring attention to #GLITCH awareness month and support me. I can never be more grateful! (Love you honey)
When our family journey began back in 2005 while living in the FM Community we saw many doctors going back & forth between whether I had a heart condition(due to my family history) or some form of #Epilepsy It was then at that time we decided to make the trip to Rochestor to be seen at Mayo Clinic. At that time it was decided; I did in fact have various types of #Epilepsy but the confusing factor was my Auto-immune system that was throwing the doctors off back in the FM area because it can resemble other things. (so treating me for anything BUT Epilepsy)
Auto-immune Epilepsy defined by the Mayo Clinic in 2014 "is suspected based on frequent or medically intractable seizures and the presence of at least on neurological anti-body, inflammatory changes indicated in my spinal fluid or via a MRI or personal family autoimmunity. It also stated come 2020 by Mayo Clinic they have discovered those more at risk in estimation is 1 in 7 out of 20 (5-35%) people with a new onset of seizures with an autoimmune cause."
After this discovery of course more tests were ran to see what antibody was causing my autoimmune disease #Glitch. It was found I had GAD-65 antibodies which were causing my auto-immune Epilepsy which is very rare and difficult to treat. Some known potential symptoms of having GAD-65 antibodies include "motor symptoms such as muscle rigidity and spasms, limb ataxia, balance disorders, and myoclonus. Also, Cognitive deficits include memory loss, irritability/personality changes and hallucinations. (oh joy for my supporting hubby on my personality changing at any minute...menopause was bad enough I am sure lol)On an MRI temporal lobes are typically swollen along with the shrinking potentially of the brain stem"
Ok well, that is what the1st type of #Glitch discovered by Mayo which began treatment with the med Keppra as well as IVIG treatments, and of course many trips back to Mayo for cognitive testings, more MRIs etc. Well my chest is starting to give me signs I need to wrap up so more to come to explain treatments of what IVIG is...see some pics below.
Receiving IVIG but still supporting my boys back home in their sports. Thank you mom & dad for always sitting there with me through these slow anti-body infusions to fight my GAD65 autoimmune disease.
Supportive hubby #TeamParmer