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and also a german guy is watching.....
Posted: Mon Nov 26, 2007 9:33 am
by robin50
a rather "OLD ONE"!?
close to 58 years, retired since 10 years...pp-ms since 1985. el. powerchair driver (american type, invacare, very fast!!!)
married, 4 still grown children and living fine in a small middle-age town north of frankf., germany....
ROBIN
Posted: Mon Nov 26, 2007 2:30 pm
by Lyon
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Posted: Mon Nov 26, 2007 11:20 pm
by RedSonja
In that case do you know these sites too?
ms-lebensbaum.de
ms-aktiv.foren-city.de
Might interest you
Grüße aus dem Bodenseekreis
Posted: Mon Nov 26, 2007 11:31 pm
by robin50
of sure, i know that sites,
and i think, we have met us there, sonja...i m called "guenni" there !
this is the third american board, where i am busy....
we will "meet us"
ROBIN (guenni)
Posted: Tue Nov 27, 2007 12:23 pm
by ssmme
Robin,
Welcome...I'm curious about your diagnosis. Did your ms change to ppms in 1985 or was that your original dx?
Marcia
Posted: Tue Nov 27, 2007 9:24 pm
by robin50
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...
robin
Posted: Wed Nov 28, 2007 12:41 am
by Sandrine
Hi Robin,
no escape, we meet everywhere in the www
Best wishes,
Sandrine
Posted: Wed Nov 28, 2007 6:40 am
by TwistedHelix
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,
Posted: Wed Nov 28, 2007 7:48 am
by robin50
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...
Robin