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Craig755
@craig755

Posts: 3
Joined: Aug 15, 2011

MMN or ALS

Posted by @craig755, Oct 28, 2011

Does anyone have any info on MMN (multi-focal motor neuropathy? I have been diagnosed with having MMN or ALS and I will begin receiving IVIG therapy. How I respond to the therapy will help determine which disease I have. Any thoughts or information would be appreciated.
Thanks

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DELIA SANDERSON
@deliasanderson

Posts: 176
Joined: Nov 05, 2011
Posted by @deliasanderson, Nov 6, 2011

i just posted re leukodystrophy. it has a component i believe to als as it’s a weakness or deterioration of the myelin sheath and thus the neurons misfire and also stop working. it’s due to lack of an enzyme to break down the fatty protein lipids. hope your diagnosis isn’t too serious and i wish you luck for a full recovery. delia


Craig755
@craig755

Posts: 3
Joined: Aug 15, 2011
Posted by @craig755, Nov 6, 2011

Delia

Thank you very much for your reply. I will look for your post on leukodystrophy. Good luck and thank you again. Craig


DELIA SANDERSON
@deliasanderson

Posts: 176
Joined: Nov 05, 2011
Posted by @deliasanderson, Nov 6, 2011

HI CRAIG, I WAS JUST READING THE SITE HEREIN ON STEMCELL RESEARCH. I DON’T KNOW FOR CERTAIN YET WHAT TYPE OF LEUKODYSTROPHY THE BABY HAS BUT IT’S GENETIC FROM BOTH PARENTS SO TO ME, IT SOUNDS LIKE KRABBES, THE DISEASE THAT JIM KELLY’S SON DIED OF. UMBILICAL CORD RESEARCHERS ARE REALLY TRYING HARD TO HELP ALL AFFECTED AND WHO NEED THE MYELIN SHEATH REPAIRED SO THE NEURONS CAN GROW AND/OR GROW PROPERLY AND NOT MISFIRE. HAVE YOU SEEN THE MOVIE, LORENZO’S OIL WHICH IS OLIVE OIL AND RAPESEED OIL. YOU’LL FIND THE PROPORTIONS IN MOST SITES WHEN YOU PLUG IN THE MOVIE NAME. THEIR SON LIVED TILL 30 WITH ALD AND HE WAS DIAGNOSED AT 4. SO THIS IS PHENOMENAL.
THE MYELIN PROJECT WAS SET UP BY HIS PARENTS. HIS MOTHER IS NOW DEAD BUT AUGUSTO, HIS FATHER STILL OVERSEES IT. HOPE YOU’VE HAD A GOOD DAY. DELIA


shanhay
@shanhay

Posts: 5
Joined: Nov 07, 2011
Posted by @shanhay, Nov 7, 2011

Have you been tested for Lyme disease? I have recently learned many Lyme cases are misdaignosed as ALS.


Craig755
@craig755

Posts: 3
Joined: Aug 15, 2011
Posted by @craig755, Nov 7, 2011

Shanhay
Thanks for the reply. I was tested for Lyme disease. Thanks again.
Craig

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