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Experience Project.
Posted: Tue Mar 13, 2007 12:28 pm Post subject: My wife is an Aimspro patient
my wife has had MS fo 14 plus years and we desperately tried everything, treatments, diets, and so on. we researched desperately as she became progressively worse until she became confined to her bed.
We were sceptical about Aimspro, the negative messages we read, until we were fortunate enough to find a group of Aimspro users, the group shares its experiences amongst themselves and we joined in.
To day my wife, although still in a wheelchair can now cotrol herself, can feed herself, sleeps al night, and is slowly regaining what she was losing.
We are glad we took the chance and tried Aimspro and we are extrememly grateful to the group we belong to who show us the way.
Our personal thoughts are that the only expert is the sufferer themselves.
Joined: Sep 23, 2007 Posts: 157 Location: Lexington, KY
Posted: Fri Mar 14, 2008 3:12 pm Post subject:
I have an acqaintance who has suffered ON since she was 5 years old. She was in her 20's before the MS dx and twice a year she goes to London for Aimspro and uses Copaxone weekly. She has had no progression in her MS and said that she has an exacerbation approx. once every 8 to 10 years. She's in her 50's now. I'm not sure how many years she's been using the goat serum but she swears by it. Does it work better for people with certain damage like ON over the MS hug type symptoms?
Marcia _________________ DX'd 08/2006, RRMS, currently in the Tovaxin extension study group.
AT THE age of 64 most people are dreaming of a restful retirement, but thanks to a potential wonder drug Billy Edmiston is now dreaming of sailing his yacht Tallulah across the Atlantic Ocean.
The pensioner from Portsmouth has had multiple sclerosis for 20 years but has just passed his yacht master sailing exam – giving him the chance to charter a boat anywhere in the world.
'To cross the Atlantic and all the challenges it represents would be fantastic,' he said. 'Even to be thinking like that is amazing after where I was a few years ago.'
Mr Edmiston, who lives in Claydon Avenue, Milton, Portsmouth, with his wife Heather, son Sam and daughter Daisy, first realised he might have an illness when he suffered balance problems in 1988.
He said: 'I kept trying to run and I would just fall over, so I knew something was wrong.
'I went to see a doctor and they said I had progressive MS.
'It was a bitter blow but I was quite lucky with its slow development.'
Mr Edmiston was able to live normally until 2004, when the pain of the illness grew and his condition got worse.
'I was suddenly having to use crutches and a wheelchair, and it was terrifying.
'A friend suggested the drug Aimspro and I agreed to test it as an informed consent patient.
'It was a series of injections and the difference they made were total.
'I felt a heavy pain lift away and within days my mobility was improved.'
That same year Mr Edmiston was offered the chance to go sailing and within hours he had caught the bug.
He said: 'It was a short trip from Buckler's Hard to Chichester but that was enough to let me know I loved it.
'I took a string of exams and in March I completed my Yacht Master's Certificate of Competence.'
Mr Edmiston now dreams of crossing the Atlantic in a boat, but he has also helped form the charity Proventus.
It raises money for work on neurological, auto-immune and inflammatory diseases.
Mr Edmiston said: 'Without this drug I couldn't walk more than five yards, and now I think of crossing oceans.'
BILLY Edmiston took the drug Aimspro as an 'informed consent patient'.The phrase means that he knew the trials had not been completed.
Aimspro is the trade name for an MS treatment produced from the serum of blood obtained from vaccinated goats.
The serum is obtained from the goats in the USA and then sent to the UK for purifying.
The drug has not yet been licensed, though a third phase of trials are due to begin shortly.
A Reply from a reader.
Brian,
Portsmouth 16/06/2008 07:34:43
I have a daughter who has progressive MS. At great expense she too tried this so called "wonder drug" and it did absolutely nothing. The producers of Aimspro and I believe the group Proventus are currently under investigation and I believe that it is criminal for newspapers such as yourself to promote this "miracle" cure without strong evidence of its efficacity. Billy Edmiston has been promoting this for a while now, yet there has been no scientific evidence for his claims. All research trials to my knowledge have either been abandoned or proved nothing.
All over the country, sufferers of MS and their families were hearing of Aimspro and clamouring for it. Some were able to get hold of it, although no one has ever established how many.
Yet, just three years later, its true value is being challenged by medical experts and charities, many of whom are unable to speak publicly because they are involved in complicated litigation with Daval International, the pharmaceutical company behind the drug.
Most significantly, the MS Society has just revealed it is concerned that users of Aimspro, a potential anti-inflammatory treatment, are spending their life savings and placing too much faith in a drug that is untried and not properly tested. As the drug has not been formally evaluated, it is impossible to judge whether it works.
Moreover, the Society is raising concerns that the drug is being promoted in an evangelical fashion by the charity Proventus (set up to lobby for wider access to drugs such as Aimspro).
If as I suspect Aimspro turns out to be just another quack con, then The News is also equally guilty in helping to perpetuate the fraud. I would respectfully request that your writers do some decent in depth research prior to giving "free advertising" for a product that in my opinion has no proven success. Besides my daughter who has tried it, I know of other people who have raised money through charity to try this "medication" and have had no bene _________________ Keep smiling as who knows what good things might be around the corner and if the road snakes a bit keep going.
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