Re: does anyone else have white matter scarring?

[Guest guest]

Hey

can you quote what it says on the report about the white matter? I haven't ever heard the term scarring used in a report. had white matter changes and I think the myelin is similar to the white matter...have you thought about a luekodystrophy for her? Go to www.ulf.org and see what you think. Also, i don't think you can have MS until you are an adult. I could be wrong. However there is thought that many MS patients have mitochondrial issues and they all work inter-relatedly somehow.

the not knowing is sooo sooo hard...hang in there.

deb

mom to (07.04.96-05.26.03), Giage and Bliss

[Guest guest]

I don't know about the white matter scarring and MS, but a child can have MS. There is a young girl in my town that has it and is being treated with injections. Good luck on your search. I'll be praying for you to get some answers soon.

[Guest guest]

Yes if it is something that happened at birth then it would have shown up before I would think...if they still insist that it was a birth problem I would have the raidiologist pull the last MRI's and look agian and see if he can find it. If there is another MRI on file they are supposed to compare it anyway. With ...it wasn't until his third and final MRI that the white matter changes showed up, which concurred with the clinical picture of progression, so it was right on.

another good site to look at but list a million things is www.rarediseases.org

deb

mom to (07.04.96-05.26.03), Gaige and Bliss

[Guest guest]

So im beginning to think its some thing new, is that possible? Which is what im assuming with what you are saying about andrews, humm.

yes progression of mito (or leukodystrophy) could cause white matter changes and alos other brain changes. Remember that the Brain takes the most energy to run and if you have defective mitochondria then the brain is not getting what it needs.

deb

[Guest guest]

Deb, that’s an interesting site, hailee fits the description of adrenoleukodystrophy (ald)

look at peliez-merbacher (probably mispelled) or pmb...I know of a girl that has this and mito...I can put you in touch with their family if you are intersted...just write me off-list

deb

[Guest guest]

Deb, that’s an interesting site, hailee fits the description of adrenoleukodystrophy (ald) except that it only effects boys, go figure. Hailee has no working addrenall gland and is on steroids for it.

I will keep looking into this and ask our genetic dr. thanks

Re: does anyone else have white matter scarring?

Heycan you quote what it says on the report about the white matter? I haven't ever heard the term scarring used in a report. had white matter changes and I think the myelin is similar to the white matter...have you thought about a luekodystrophy for her? Go to www.ulf.org and see what you think. Also, i don't think you can have MS until you are an adult. I could be wrong. However there is thought that many MS patients have mitochondrial issues and they all work inter-relatedly somehow. the not knowing is sooo sooo hard...hang in there.debmom to (07.04.96-05.26.03), Giage and Bliss Please contact mito-owner with any problems or questions.

[Guest guest]

humm, I just wonder if the dr that looked at the film only had the explanation because he dosnt know about it, because I remember asking him why it was picked up on previous films and he had no answers. So im beginning to think its some thing new, is that possible? Which is what im assuming with what you are saying about andrews, humm.

Re: does anyone else have white matter scarring?

Yes if it is something that happened at birth then it would have shown up before I would think...if they still insist that it was a birth problem I would have the raidiologist pull the last MRI's and look agian and see if he can find it. If there is another MRI on file they are supposed to compare it anyway. With ...it wasn't until his third and final MRI that the white matter changes showed up, which concurred with the clinical picture of progression, so it was right on. another good site to look at but list a million things is www.rarediseases.orgdebmom to (07.04.96-05.26.03), Gaige and Bliss Please contact mito-owner with any problems or questions.

[Guest guest]

,

With regards to the myelin sheath disorder, have you looked into the use of the supplement phosphatidyl serine to help address this issue?

Regards,

& Savage.

does anyone else have white matter scarring?

Hi, I was doing some research in my daughters chart and about 6 months ago we were told that she had white matter scaring, the dr explained that this is usually due when a child is born early and goes into respritory distress. Hailee wasn’t born early no was she in respritory distress, she also has a mylein sheath disorder. I was looking around and found that some of her symptoms are also related to possible Multiple scerosis, and I was wondering if anyone else had this diagnosis also, or any of the symtoms. I guess I am still just trying to find answers, I want to know why my daughter can walk, but is unstead and cant run no one seems to know why, why does she have problems with her speech?

I guess today im just hitting a low spot in all of these problems and looking for answers.

I look forward to meeting everyone tonight at the phoenix meeting, this is our first meeting.

Please contact mito-owner with any problems or questions.