quest for the board.

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

quest for the board.

Postby HUTTO » Wed Jul 30, 2008 4:58 pm

okay to make a long story short..my nephew has been dx with epilepsy. so with the history of 4 people having ms in my family they decided to do a mri. the mri reports that there are lesions. but i had my neuro to look at the mri results and he and the other neuro agree that it isn't ms. but what is it? the mri looks as if it is a picture of his tissue. my nephew is six. the dr said that he has seen about 4 to 6 people or patients that have had this and it never materilized. i have googled it and celiac disease.. i can't find anything that it might be related. just anything. i would appreciate it greatly...
User avatar
HUTTO
Family Member
 
Posts: 56
Joined: Wed May 03, 2006 3:00 pm
Location: TN

Advertisement

Postby cheerleader » Wed Jul 30, 2008 5:09 pm

Hutto...
I am so sorry for your family's trials. Especially sorry to hear about your six year old nephew. Here are some ideas about brain lesions in epilepsy from another board- these would not be demyelinating lesions, which is probably why the docs say no to MS.

"Epileptic lesions are areas of the brain that are abnormal that allow synchronous discharges of brain activity that eventually induce seizures. These lesions can be a variety of things, neuronal migration abnormalities, atrial-venous malformations, tumors, strokes, infections, sites of hemorrhage, etc. They can also be genetic, such as a ion-channel abnormality. There are some that are due to immaturity of the brain. There are many more that we are only beginning to understand, but the point is that there are many, many things that can cause seizures."

http://www.medhelp.org/posts/show/293471

Hope you get some answers really soon. Good thoughts to your family-
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 4939
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby cheerleader » Wed Jul 30, 2008 5:21 pm

wanted to give you a bit more on "ion channel abnormalities" (proteins that control voltage and flow of ions in the cell), which are genetic, and show up in both MS and epileptic brains-

http://www.pubmedcentral.nih.gov/articl ... rtid=17246
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 4939
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby HUTTO » Wed Jul 30, 2008 6:07 pm

thanks for the reply cheer..i hope i can make sense of this..i wonder if i could some how post a picture of it..because it doesn't look like lesions. it looks like tiny little white dots in a row but only on the tissue part of the brain..my mri's have never been taken like that..i have no idea what to research..thanks for the regard cheer..seems like my family is cursed..can't imagine that i had kids..lol. just sucks for my sister. she is tore up..although my nephew hasn't had any neuro symptoms. just has the seizure that are so light you don't even know he is having them...will keep everyone posted..if you pray..please say a prayer..
User avatar
HUTTO
Family Member
 
Posts: 56
Joined: Wed May 03, 2006 3:00 pm
Location: TN

Postby cheerleader » Wed Jul 30, 2008 7:03 pm

HUTTO wrote:..if you pray..please say a prayer..


yes, I do and I will, Hutto. Sure others will, as well.
I know there are special diets for kids with epilepsy, might be a good place to start. Certainly good fats (omega 3, flaxseed) couldn't hurt. Also, eliminating trans fats. As a Mom, I really feel for your sis. Hang in there, and if I come up with anything else, I'll check in.
most sincerely,
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 4939
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby gwa » Wed Jul 30, 2008 7:42 pm

John Hopkins has treated kids with epilepsy for years with a no carbohydrate and very high fat diet to control seizures.

If you google John Hopkins and epilepsy and kids, you should find a lot of info on the subject.

As I remember, the kids (don't remember the ratio) were seizure free after a year or so on the diet.

gwa
User avatar
gwa
Family Elder
 
Posts: 846
Joined: Thu Dec 01, 2005 4:00 pm

Re: quest for the board

Postby NHE » Wed Jul 30, 2008 9:30 pm

Hutto wrote:i wonder if i could some how post a picture of it..because it doesn't look like lesions. it looks like tiny little white dots in a row but only on the tissue part of the brain..my mri's have never been taken like that..i have no idea what to research

I'm not suggesting that you try to diagnose your nephew, but you might be able to find something similar at a site like the Whole Brain Atlas.

NHE
User avatar
NHE
Volunteer Moderator
 
Posts: 3144
Joined: Sat Nov 20, 2004 4:00 pm

Postby Muu » Thu Jul 31, 2008 1:29 pm

Reading this made me just want to mention the trial that i have been on for the last 2 years which is just coming to a close for me. The trial involves the testing of the drug Lamotrigine in people with SPMS to assess whether it can work as a neuro protector. Results should be out early next year. This drug has been used for several years in the treatment of...yes, you guessed it......epilepsy.
muu
User avatar
Muu
Family Elder
 
Posts: 185
Joined: Mon Jul 31, 2006 3:00 pm
Location: London

Postby Wonderfulworld » Thu Jul 31, 2008 2:40 pm

Hutto so sorry to hear about your little nephew.

My brother has coeliac disease (as do I along with my MS), and he has epilepsy. His epilepsy has greatly reduced but not gone altogether since he has strictly adhered to the gluten-free diet- so there can be a connection there. We were both diagnosed as coeliacs in our early 30's. The process was blood-test first for anti-gliaden antibodies, then when they were positive, by biopsy of the small bowel - not a difficult procedure although it sounds unpleasant.

I hope you find some answers.
Wonderfulworld
Family Elder
 
Posts: 773
Joined: Sun Aug 27, 2006 3:00 pm
Location: Ireland


Return to General Discussion

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users