Thank you for sharing your story @A MyEpilepsyTeam Member. I'm sorry for all you have been through. I trust you have read some of the string here. I am becoming very curious as to whether there is a correlation between these disorders and our seizures. There is just so much science can't know and doctors are only human even if some of them think they are God like, lol. Any of us with a chronic disorder, disease etc have met these ones. I am so interested now as to how far back (despite that my syndrome is usually diagnosed in the 40s and I'm 44) this syndrome actually started. Im going to post a new question about some of this as well. My curiosity comes in knowing if we as the patient can pinpoint a much earlier point where we feel like maybe the syndrome was showing small signs that couldn't have been diagnosed yet due to it not being full blown enough.

For example. I began having allergy issues to codeine as early as 16 and my stomach was sensitive to rum . Flat out couldn't drink it unless I wanted to have an attack in my side. Later I would develop a sensitivity to a lot of things that would eventually send me to the ER so many times that my gall bladder was removed due to symptoms that weren't supported by tests but the doctor agreed it likely would help. It didn t. Eventually I would find I was gluten I tolerant. So I find out about this syndrome and my doctor now wants me to change my diet to help. Was my body sending me signals long before the flare up of my seizures almost 2 years ago? I had been grand mal free 11 years. They now have found they think I had small aneurysms that caused the spots on my brain. Luckily they were very small and not in large veins. Funny because this syndrome affects smaller blood vessels. I ended up with a pocket of infection with what was basically a burst blood vessel in the interior of my body cavity near my liver about 5 years ago. At what point do we know these disorders/syndromes are present. Do they actually do damage slowly over years? Only to finally be diagnosed once all the havoc they cause is enough? I just can't agree that it just shows up one day and doesn't have any signs, however small or seemingly unrelated. Hmmmm?

Mentioned Users

A MyEpile...

I started having small seizures about 18 years ago, I didn’t know what was wrong, and my dr at the time tested me for all kinds of things, and we could not figure it out, until about 2000, when I had my first gran mal in my sleep, then I was sent to a neurologist, went through years of testing and continue to try different meds, my thyroid is low as well, so I was on meds for that, and I have a leaky heart valve, so I was taking low dose aspirin daily...then about 4-5 years ago I had a stroke out of the blue on my way to work...I went to the hospital and they did a bunch of tests, it was finally diagnosed as a blood clotting disorder...the dr at the hospital I seen when I had the stroke sent my blood work to test, and it came back as positive that I have lupus, so since then I have been through a lot, all in a short time...I take pills 4x per day for all my disorders...my gran mals are being controlled, but I get the small ones almost daily...and I have depression now as well...anyway, I can’t drive, I cannot work efficiently, my work insurance denied me disability payments, but I am receiving CPP disability... I miss my life before, I feel like a failure, I don’t know, it is awful, I was totally fine before, there was nothing wrong with me, I was healthy... anyway, my neurologist said I have epilepsy, I have lupus, and I have hypothermia, and I have a blood disorder (forgot the name) ...none of the dr are saying that they are related or part of one thing, although lupus has all of these listed under symptoms...good luck, I know it’s hard, my disability payments are not much, I am always worried about money...wish you all the best in 2018!!

Thank you @A MyEpilepsyTeam Member. May I ask if you feel like any of this is controlled? I'm trying to find a way to get well enough again to work. I have lost everything at this point other than my daughter and I really want to not lose her too. I am living with friends but only until June and then I don't kniw what will happen.

Mentioned Users

A MyEpile...

I have multiple auto immune diseases like RA (arthritis) bulloïd pemphygus, coeliakie and Hashimoto disease. My epilepsy began suddenly at age 11 and disappeared when I was 23 or so and then came again in this form; tonic seizures after being very ill from RA.

Thank you @BryanMarthin. This is exactly the information I'm looking for. I was gluten free for about a year after my gall bladder waz removed and the pain got no better. So I went gluten free after some research. I am going to start a diet soon that will help to find food allergies that may be playing a role in my deteriorating health.