Update: LDN Trial at Univ. Texas Southwestern

August 27, 2004

Just had checkup with my neuro. The LDN study is in the works, but

still wending its way thru Internal Review. He described it: 2 groups

of 20, placebo double blind for 20 months, then switch groups for

another 20 months. And they are going for more than just symptom

relief, only enroll long time MS patients with significant deficits,

so they can measure recovery improvements like I've had in walking,

strength, reflex etc. We will need larger trials than this to prove

out LDN, so this is just the beginning.

Told him I was solo on LDN since April when I saw him last. He was

thrilled with my exam, hugely improved walk, new muscle mass, overall

decrease in MS symptoms. He thinks that I am into repair mode now,

and asked me to do an MRI to see if I am remylinating old lesions.

Will have that in a month or so, and I have 4 recent MRIs from 2002-

03 for comparison. I will try to get images I can post at

http://LDNers.org He is really curious about this amazing LDN

recovery since Feb 2004, because I was in bad shape after 3 years of

precipitous decline, walking with cane, even approved for a motorized

wheelchair last spring. He said there are very few progressive MS

cases that enter recovery mode like I have.

I'm not going to post at http://LDNers.org about the UTSW study until

they have public info about recruitment, but I think it is OK to

update the discussion groups. You can tell your doctors the UTSW

trial, if they are reluctant to prescribe Or if they are researchers,

I can get my doctors contact info to them.

SammyJo

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