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Anthony90 Message
14 Aug 2012, 02:23 PM

Has anyone tried the rpi-78m? I am very curious to know, does it work? Thanks guys i appreciate your info! Gonna be getting approval to try!
Matt74 Message
2 Oct 2012, 05:09 PM

Hi Anthony, Apologies for replying to your post so late but I haven't logged on to Rare Share for a while. I'd read about rpi-78m on a AMN site in 2009 (the year I was finally diagnosed). I was directed by my consultant here in Birmingham (England) to the UCL (London) where the only national trials had just taken place. Basically after talking to a leading consultant at the UCL (Dr Lachman) he was of the professional opinion that sadly there is no evidence to suggest that rpi-78m repairs/replenishes damaged myelin sheath. I believe the research conducted was a double-blind trial - a standard model for this kind of research. rpi-78m is actually super-heat treated snake venom, which in scientific circles (i've since found out) is historically in "medical quackery" territory!! Hopefully this is of some kind of help. Stay strong mate, Matt
Anthony90 Message
2 Oct 2012, 05:20 PM

Thank you matt. I have recently been trying to be in touch with a scientist here in the united states to try. So there is no "proof" of cure whatsoever?
Matt74 Message
2 Oct 2012, 06:15 PM

Hi Anthony, The day I was diagnosed I was informed that sadly, at present, there is no cure for AMN. However from the info that i've read online over the last 3 or so years it looks like we can glean hope from the advances made in stem cell research and also gene therapy - it's just that it may be a while. I have a friend who's wife has MS (which like ours is a de-myelinating disease) and, through talking to her, I often read news stories online that bring real hope for us all in terms of MS-related medical breakthroughs. From your profile I see that you're 22 (I turned 38 in May) and I believe now that I started experiencing the early onset of AMN around 28. My point is that at 38 i'm still very much facing AMN head-on and by that reckoning when you get to 38 you'll still be very much fighting-fit as well!! So, as far as research goes, that's 16 years worth of scientific advances and (as my consultant pointed out to me) that's a long time in medical terms!! The best personal advice I can give is stay mentally and physically active and be wary of "alternative" therapies (i.e. scientifically unproven). Here is another great online AMN forum for you to look at: Cheers, Matt
Anthony90 Message
2 Oct 2012, 06:31 PM

Matt, Yes, i myself have a friend with MS. He walked with a can for awhile. He now 42, can walk, run, jump etc. He says one day he got tired of it and made himself run. This was i believe 15 years ago? Keep fighting brothers
deengot2 Message
6 Oct 2012, 04:49 AM

Hi Anthony, I have read a lot about rpi-78m I believe you should get multiple opinions about things like this before making up your mind. I have read that some people have noticed improvements from it while others have not. The same goes for Ampyra and other treatments. What works for some people may not work for others. This disease effects everybody different. I have been taking a lot of antioxidants and noticed a better feeling and there is a trial going on right now for that. I was diagnosed about 8 years ago and a couple years after that was using forearm crutches. As of now I walk unassisted and can get around although my gait is bed. I have a FB page with a lot of info and peoples personal experiences. it is ALD/AMN FAMILY it's a closed group but I will add you if you would like to join.
Anthony90 Message
2 Nov 2012, 09:42 PM

Deen, I do not have a Facebook, but i am really curious of some options i have. I use forearm crutches still and have been trying to walk my hardest!
Timothy81 Message
29 Nov 2012, 07:10 PM

Hi guys, ive been trying to look for help for the past 10 years and no such luck yet. This stuff im going thru is very tiring and painful in my whole body, and knowing that life consists of just taking pain medication for the rest of my life is something i dont wanna go thru i cant... its very stressful and depressing.. Does anyone out know of any help that i can get anywhere i dont care where... PLSSSS!!!
Timothy81 Message
29 Nov 2012, 07:12 PM

Its so painful and i can barely walk.. i use a cane as well as a walker when i need it, i just want the use of my legs back completely, i do what ever i have to to get my legs back... if anyone has any info pls email me at pls.. ID REALLY APPREACIATE IT!!!
fdemiranda Message
30 Nov 2012, 11:54 AM

It does take time to get to terms with this F. thing. and to the fact that there is nothing to take it away (at least not yet). All I can say is try to get all the help and support you can get. Something that did improove my life was to get a scooter to be able to move around freely (I have the luggie - which is fantastic! small and cool). We are still alive and breathing, I find comfort on thinking that there are worse conditions (I know its not fare). Do take the pain killers if they help. Make your life as easy as you can. And foremost, enjoy your life how ever you can! remember you are not alone... Whish you the very, very best!
Timothy81 Message
30 Nov 2012, 08:09 PM

Likewise and thank you!!!!
memphiscat1998 Message
3 Dec 2012, 05:29 PM

Timothy 81, have you been checked for Addison's? Your symptoms of fatigue and pain sounds like you could have Addison's associated with your AMN. I have been diagnosed with AMN and Addison's for almost 9 years now.
stevensims Message
12 Dec 2012, 07:53 PM

HI, I suffer with very bad pain and very bad spasm's! the best thing I have found is Vitamin D3 , I went from taking 100mg of Amitriptyline to just 10mg! however after taking it for 2 months my symptoms are back! I've researched loads and for the vitamin d to be converted to its active form it needs Magnesium! for the past month I've been bathing in Magnesium Chloride flakes I now take 30mg of Amitriptyline and I'm reluctant to increase it, I still get pain but every day is different! All the best Steve
Mthicksten Message
23 Jan 2013, 06:26 PM

I am new to this group, but like everything being said. I am 56 so I have 25 years of symptoms and 12 years since diagnosis of AMN. Take meds for adrenal insufficiency really improved my overall health. Much much more healthy. Concerning making life easier. I struggled for years with a cane, forearm crutches , and walkers. Eventually I sat down in wheelchair, scooter, electric wheelchair and life is much easier. Also I have been on pain meds for 12 years. I have been able to cut down on the amount but still require. I have a baclofen pump which really helps spasticity. Baclofen is available oral as well, just causes drowsiness at right dosing. I don't like AMN but I decided to Live with it. My wife has stayed by my side thru lots of stuff. God gives me strength to endure. I was also interested in this RPI78M.