Has anyone used this? I met someone yesterday who has started this and she said people are commenting that she looks better. A process I know but thinking of giving it a go. Nothing to lose except possibly the wheelchair won’t be needed!
Your comments would be appreciated.
Jam
Hi jam, this was talked about a few weeks ago. Got very heated, so kept my thoughts to myself! But it got me looking into it and I’m seriously thinking about giving it a go. Like you I don’t think I have anything to lose, and let’s face it, there’s nothing else for us.
Thanks for responding.
I met a lady briefly who is trying it, she is rrms so like most things in ppms it may or may not be successful but I think I will try, she has even had the the dr say she is looking well. If u have any success let me know. I have appt at dr next week to hopefully I will get a script.
Have tried stemcell and CCSVI but still the wheelchair is becoming used more regularly.
Take care.
It really is the last resort for me.
Jam
It doesn’t matter what anyone else thinks. I’ve come to feel sometimes that it’s really frustrating to have the PPMS label. All other types get treatment but we’re looked at with pity and left to get on with it. I feel I’m lucky at the moment as I’m still mobile with a stick but I’d love to have a chance of slowing the progress down. I think if I was in your position with rapid progression or big changes looming I’d grab any treatment too. I was very happy to be a guinea pig and have a new operation when there was a chance I could be paralysed and you’re doing the same thing. Don’t let anyone influence what you feel is right for you.
Cath xx
Hi Jam, I was just wondering how you got on with your dr - did you get the script, and have you started on the program yet? I knew there would be no point asking my GP, so will go it alone. Just building myself up with the vitamins before I start on the main stuff. Have you looked at the CPN web site. I’ve not joined but will soon. Take care and all the best. Eve
Hi Cath, Like you I feel lucky to still be walking with a stick, although not far and very slowlyy. I use a scooter for longer trips. I hope the operation worked well for you. Maybe it will be available to more of us with PPMS in time. I don’t even wish for great improvement any more, just to keep putting one foot in front of the other. Best wishes Eve
[quote=“magicmoon”] Hi Jam, I was just wondering how you got on with your dr - did you get the script, and have you started on the program yet? I knew there would be no point asking my GP, so will go it alone. Just building myself up with the vitamins before I start on the main stuff. Have you looked at the CPN web site. I’ve not joined but will soon. Take care and all the best. Eve [/quote] , k
Yes got the anti. and all the supplements. Tough going with all. I can see why a lot do not stick with it, only been on prot. for 5/6 weeks. I keep reminding myself, when the going gets tough, the tough get going! Side effects for me have been nausea, mild fluey symptoms and either I have deteriorated or a phase of worsening! Have not noticed any improvements yet but I am condioned to a long/hard haul and if I could only get the rib pain under control it should be easier!
Will keep on keeping on …
Yes it is tough with the amount of tablets 5ish weeks so very early days! Nothing ventured, nothing gained!
There is resistance from the scientific community to this treatment. Resistance from scientists who have virtually given up on SPMS and probably PPMS because ??? who knows!!! Too tough ehh. Put your heads together and find a cure; you have the technology and with the internet and world wide web modern science has far more than early 20th Century scientists who had to wait for a paper to be published
Shame on you for failing to find a cure.
You could easily find a cure by the end of the year. If President Kennedy set the challenge to get to the moon and it was achieved, I challenge the scientists to find a cure for MS by 31st December 2014
Boooo, wake up!!!