Quote:
Originally Posted by jmclark
Hi, and thanks for the replies. I am glad to have found this forum! I will be very interested to read through the celiac and neuropathy posts.
I have had an MRI, and it showed no evidence of tumor or blood vessel malformations, but did show that white matter was infiltrating grey matter where it shouldn't be. I don't know what this means or implies (ie. does it support epilepsy, something else, or nothing). I do see an epileptologist, and another neurologist who specializes in neuromuscular issues did the EMG.
-I was diagnosed with celiac almost 4 years ago, and have been religiously gluten free with no cross-contamination issues (live alone, don't eat out, etc.).
-I was tentatively diagnosed with frontal lobe epilepsy 3 1/2 years ago due to frequent and at times severe nocturnal partial motor seizures but these episodes were never completely controlled. BUT as of 3 weeks ago I have been medication free (with doctor supervision) and episodes are not nearly as bad or as frequent - which leads me to wonder if these "seizures" are not seizures but something else that anti-seizure medication was making worse (any thoughts/ideas on this appreciated!). PNES was ruled out based on psych assessment and symptoms (ie. nocturnal, significant post-seizure effects, seizure type, etc.)
Joanie - you mention you have partial seizures (as well). What are yours like? Does medication help you?
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Hi, JM...still trying to get used to this system...plus my memory is still not that "great" which doesn't help either....LOL!
About my seizures, first I would like to post one of the better links, if this system will let me to "partial seizures"...let's try...nope says I am too new yet..need to have more postings...sorry, but note info below.
..the reason I wanted to send this link is there is much in the partial seizure area...specifically it is on one side of the brain typically, mine being on the left temporal lobe and they are short usually in affecting anything. Mine were not always the same:
1. Scary strange feeling, fear was for no reason, very very tired, like when you are driving on a long long drive...at night...and you want to close your eyes and fall asleep...this happened the most...and I would "black out", but I would remember these
2. Would just stare ahead and lose time, and not remember, people actually told me about these
3. Could not say what I wanted to say, the wrong words would come out, this is actually more into another type of seizure called aphasia
4. My legs moving and jerking at night...and painful as well
Yes, my Keppra, actually the generic which I forget the name of...part of my memory issue...I could not possibly afford the "real" deal...it is over $400.00 per month on my insurance...told my neurologist and then he prescribed the generic for me, it does help. I have not had any seizures since my surgery.
I am thinking that removal of the tumor was the best cure on that because even though I was on the drug, I still had seizures until it was resected.
White matter in your MRI is indicative of my current biopsy. Do you have any liver enzyme elevations? Do you still have your gall bladder? Any eye or ear problems? How about your blood pressure??? Heart rate? Sinus problems? Headache?
Here is a report from my neuro surgeon concerning my first MRI that I would like to share, just so you can check compared to yours on this:
"The tumor seems to have a dural-based component, but it is very worrisome the T2
abnormalities surrounding the mass. The plan is to repeat an MRI of the head
with gadolinium with T1 stealth sequence and also GRE. We will make further
recommendations after the MRI. I discussed all this with Mrs. Pfeiffer. She
understood and agreed to proceed with the plan. I am also providing her a
prescription for levetiracetam generic per her request."
My understanding about the T2 abnormalities is they were the white matter; that is why I am sharing this with you, just to check and see if the MRI was done with the same sequences.
Hang in there...you are not alone...there is a lot of new help for us with Celiac Disease.
Joanie (I do have some great recipes to share with you too, if you would like.) I have learned to love Quinoa!
