Our latest neuro appointment

March 1, 2010

Hi all

We just got back from our annual appointment with `s neuro at UCSF. His

last MRI was last August and there are NO new lesions showing, none enhancing.

Coming up to his 5 year anniversary on 4.5mg LDN. The only difference this

visit appears to be a slight loss of sensation in his feet. You know when they

do the test where they put the vibration prong on a toe and you have to say when

the tingling stops. Unfortunately said it stopped way before it did on

both feet which is different than previous visits.

So now he`ll have another MRI, this time just his spine to see if anything shows

up. His neuro (2nd to the top man at UCSF) said quite often small spinal

lesions dont show on the MRI anyway.

Apart from that is in top form. I did ask him about his opinion on

CCSCI given that he was the doctor that was interviewed recently for TV about

it. He said that he doesnt want people rushing into a very expensive

proceedure until there is proof that it works. He said two people have had very

bad results from the surgery. I reminded him that plenty of people have

actually DIED after taking Tysabri which is still prescribed!

He also says he ONLY prescribes LDN if his patients complain of fatigue which is

the only thing they have proof of so far that it helps. He is however very

excited about the recent publishing of the trials they did at UCSF that proves

it helps with fatigue. I told him it has never helped with any fatigue

but there you go!

So, really, unless you already know about LDN and specifically ask for it for

fatigue, he wont offer it.

And as we walked out of the suite, we saw the usual dozen or so people in the

waiting room, with their walkers and canes.

Still very very frustrating!

Bev

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