Hi and welcome to the Chiari forum.
My deepest Sympathies on the loss of your Brother....and I am so sorry to hear about ur niece as well.
The white matter referred to here on this forum refers to lesions that developed from intense head aches....
It is true Chiari also has similar symptoms to MS and it too is something many of us get mis-DX'd with....and we do need to educate our self on ALL conditions related to one we are DX'd with and research as much as we can.
For those with Chiari that have had mini strokes , this condition Cadasil is worth looking into....so for adding this info I want to thank u lionfish as it just may help someone on this forum.
I pray your niece has a smooth recovery.
My brother has had many of these symptoms, white matter disease,etc.
headaches, and told he had MS, Syphilis, etc and everything else they could think of. Finally, one doctor checked for Cadasil. There it was.
All the strokes, white matter disease on MRI, etc. The dementia set
in later, and he passed away at 63 a few days ago. My niece is 37
and now had a small stroke after childbirth and has similar white matter
changes on MRI. We are having her tested, as this is a genetic disease.
They also told her after an MRI and LP that she had MS, just like my brother. Then after the LP they told her she didn't have MS, but her MRI had white matter disease. Too much similarity between MS and Cadasil.
Thanks for your post! Whew! That's a relief...I thought it was probably due to migraines too...but a lot of the literature mentions them with MS...Thanks again! Take care!!!!!!!!
Well usually the first thing they look for with MS is whether you have lesions showing up on your MRI. The only thing I can guess is that it doesn't look like MS lesions or I am sure that they would have mentioned it to you by now. As far as I know, the other thing they can do is a LP and they test your CSF fluid for certain proteins that can indicate MS. How exactly did they described the white matter, did they say it was a lesion or just differential white matter?
I thought that could possibly be the explanation too. No one has even questioned MS...I've read that that can show the white spots on on an MRI...Egad...I would rather have them related to the migraines (only ever had "migraines" with the Chiari)...I think MS would be just awful. Any idea how they test for that?
Hello,
I have read on here that sometimes the white matter on your brain can be damage from having constant migraines...so I am wondering if that is what it is? I take it that they have ruled out it being anything like MS?
Carolyn
Turns out there were seen on all 3 of my MRIs (one pre surgery, 2 post) but no one mentioned them ... my NS basically blew me off when I brought it up recently.
From my internet research I've learnt that they are most likely caused from migraines. No way to prove it though.
If your MRI also says "no enhancing or diffusion positive lesions are seen" I believe this means it does not look like MS.
I have a Chiari friend with an almost identical MRI report also ...