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PostPosted: Mon Jun 22, 2009 3:47 pm
by mrhodes40
I am really happy for you! Good luck Alex! We will all be thinking about you waiting to read what happened . Even though I have stents I find I am intensely interested in everyone else also... We've waited so long for something new. I hope it works for all of us very well

PostPosted: Wed Jun 24, 2009 1:27 pm
by peekaboo
How are you Gibbs? Hope all is well and eagerly waiting to hear from you about your stanford experience :)

PostPosted: Mon Aug 17, 2009 4:49 am
by gibbledygook
Old regimens section update. I'm still sleeping on an inclined bed, since 8 May 2009, with a few weeks off here and there travelling. The spams which reared up last Monday through to Wednesday inclusive and seemed associated with my anti-cancer broccoli sprout extract pills have been much calmer but still there. This is disappointing as I hadn't really had any spasms since the operation in the US. I suspect that the pills caused a sudden spike in coagulation AND immune stimulation AND apoptosis of the endothelium. This could easily have opened up the venular gaps and caused a bit of an inflammatory reaction. So sadly it seems like these pills are strictly verboten. I'm sad as they look absolutely fabulous for cancer. Best to stick to the rat poison and plavex!

I walked about 600m yesterday with my cane in one fell swoop and I could have probably walked another 300m or so by my reckoning but the gelataria got in the way!

I'm still far more confident on the bladder front as I only seem to get urgency when the bladder is actually full now as opposed to whenever the nerves feel irritated which could have been up to every hour.

I still have the sensory deficit in the right hand which appeared last week with the spasms but yesterday it mostly disappeared.

I've hardly had any movement induced phosphenes these last 2 months.

The bowel function is ok so long as I continue taking magnesium citrate and I'm voiding manually much less.

I'm having my MRI, courtesy of the NHS, my first ever NHS funded scan, on the 1st September but I very much doubt that there will be much change there. Still the delay compared to most people's follow-up might allow for some more healing in the CNS although the broccoli sprouts may have put a spanner in the works.

When I was beginning to lose the ability to walk in 2004 my NHS doctor told me there was an 18month waiting list to see the neurologist and a further 9 month waiting list for an MRI. So "Why bother?" she said before kicking me out after 5 mins. That's the NHS!

PostPosted: Mon Aug 17, 2009 6:18 am
by LR1234
Great hearing from you Gibbs, I was wondering how you were doing.
I haven't had an NHS MRI yet but I am scheduled to see "our" neurologist in Oct so I am going to ask him for one then.

I am happy to hear that some of the nasty spasms are easing up and that you feel there are some improvements again (even though they are not as good as when you first had the op)

I found Garlic tablets gave me a major flair up so I believe these supplements can do things like that.

Lets hope you contiue to improve

L x

PostPosted: Mon Aug 17, 2009 10:09 am
by Sharon
Glad to hear the nasty spasms are almost gone --hopefully, they will stay away. Sounds like you are noticing other positive changes. I seem to have a couple of days where I notice a subtle change, and then go for a couple of days with nothing going on.

I will be interested to see what you put back in to your supplement regimen once you are off the blood thinners. I am adding things in slowly - back to the Omegas, Magnesium, Curcumin, D3, Calcium and a Centrum Silver vitamin. I am going to wait awhile now before I add anything else.

Sept 1 for the MRI -- nice that you were able to get it taken care of through the NHS.


PostPosted: Thu Aug 20, 2009 6:37 am
by gibbledygook
thanks for the messages.

LR, that's interesting you noticed a flare with garlic which is also a great anti-cancer type of supplement. I guess that anything which encourages apoptosis is to be avoided...

PostPosted: Mon Dec 14, 2009 3:31 am
by AndrewKFletcher

During I.T. pilot studies there were reports of spasm increases, which at first were thought to be relapses but generally following the spasm increase there was significant improvements within a few weeks.

Have you noticed this?


This also happened with people who have spinal cord injuries and who used I.T.