EP is a community where members connect through shared life experiences-- like MS--and so much more. You are not defined by any one thing, so be your true self and find others just like you at
Experience Project.
Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Mon Nov 26, 2007 4:30 pm Post subject:
Welcome to thisisms Robin!
I hope you find your time here interesting and enjoyable.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Joined: Nov 26, 2007 Posts: 12 Location: near FRANKFURT
Posted: Tue Nov 27, 2007 11:24 pm Post subject:
oh yes, marcia
the ms starts slowly in 1985 and increased continuosly over the years. appr. 8-10% of all ms-ers have this prim. prog. form....but, in 2000 my ms stopped on a level of 8....something and in the meantime, i have some lowering of symptoms. stabel since some years!!!
HOPEFULLY a kind of standstill???
in 2005 i started 3 mg capsules of LDN daily in the evening and had some succes.
i got my ms diagnosis rather late, after 6 years of slow increasing symptoms in 1991...i met 14 different docs in that time...this was harder than the ms itself, not to know why "the body" dosnt work and move...in the age of 35 - 41...
Joined: Mar 26, 2005 Posts: 592 Location: Northamptonshire, England.
Posted: Wed Nov 28, 2007 8:40 am Post subject:
Hello Robin, and welcome to the board. It seems as if our MS has followed a very similar pattern: my first symptoms of PPMS started in around 1985-6, but it was so mild and gradual that it's hard to put an exact date on it. The doctors took over two years to diagnose me which, as you say, is a very difficult time to go through.
I've reached somewhere round about 9, and although the decline is continuing it seems to have slowed down considerably.
I don't receive any therapy, so I'd be interested to know in what way you think LDN has helped, _________________ Dom
Joined: Nov 26, 2007 Posts: 12 Location: near FRANKFURT
Posted: Wed Nov 28, 2007 9:48 am Post subject:
hi dom.
you ask about my LDN "success"...well, i f got more force, my fatigue was gone, also the "heat sensibillity" was lower...i can move MYSELF from the wheelchair to the toillet...etc...but, it seems that it works different and one should test it....
a friend gave me appr. 30 capsules as a "birthday present" on my 55. birthday in jan. 2005...he himself has also a high level in EDSS (near 9)
today, i was 6 h "on the road" with my powerchair....and its cold here, frosti...
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