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SF-1019
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bullwinkle89 posted:
SF-1019 a/k/a Immunosyn is an injectible bio modifier that reverses the effects of the lesions on the spine and brain. This therapy is available in Canada, Ireland (where is was created). England, Japan, and Brazil to name a few. Alan Osmond takes this and he goes to London to get it. I would like to know why this drug is not available to people with Relapsing/Remitting MS in the United States. Copaxone is the only therapy suitable for me as I also have Bi-Polar affective disorder and the other drugs may cause me to become suicidal. I am off the copaxone as it did nothing to help me at all. I am in a small subsection of Patients that relapse every three months even with the copaxone. SF-1019 has few side effects and to me it is worth it to inject myself. I would do it I/M every day if I could get it. Please tell me why it is not available to me?

Thank you.

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hackwriter responded:
Bullwinkle,

You might want to repost this to the attention of Dr. Lava and Dr. Rumbaugh. They might know something about this drug. My research turned up some articles dating back to 2008, but nothing more recent.

Kim
 
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bullwinkle89 replied to hackwriter's response:
Thank you. They did a clinical trial in Utah in 2009 and Alan Osmond posted on his website that 'help would be coming in 2010'. Well, that drug never made it into the US. They must know about it, I did some research and a woman named Deven Blaine was handling the publicity regarding that clinical trial. She said that NMSS decided against it in lieu of oral meds. To me, this is negligent. I have now gone from r/r to secondary primary progressive. The drugs NMSS has now I am not a good candidate for, the side effects are some I am willing to bet my life on. SF-1019 has few side effects, it does not cause brain cancer or stroke. I have a family history of cancer and my younger sister suffered a stroke when she was 36. She requires 24/7 care and my 73 year old mother is finding it more difficult to take care of her. Regarding reposting, this application does not recognize my password half the time so I am sure it would take me hours to post to other Doctors. Thank you for responding but I am extremely frustrated. Bullwinkle
 
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hackwriter replied to bullwinkle89's response:
Bullwinkle,

I've had the same problem posting to this site, there's a glitch in the system.

With your permission, I could make a new post to the attention of the doctors and paste your original narrative in it.

Kim
 
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bullwinkle89 replied to hackwriter's response:
Please do! Very grateful as my disease is progressing and this drug will stop that. Thank you so very much.

Ellen
 
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Neil S Lava, MD responded:
I thought I had replied to this but do not see my response here and will retype it for you.
This medication seems to good to be true. If this medication was that effective we would be evaluating here in the US.
You might check the National MS Society website to see if they have information on it.
 
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An_243366 replied to Neil S Lava, MD's response:
Thank you Dr. Lava. this drug is not too good to be true. Thousands of people with R/R MS take this drug. It is available in Canada, The UK and Ireland (where it was developed), Brazil and Japan. It is my belief that the reason this drug is not in the US is due to agreements with the big pharm companies that are manufacturing those walking pills which are not bio modifyers.

I am literally being screwed by the same organization that is supposed to be helping me. Since I have little recourse, I will be sending an intent to sue letter to NMSS. My attorney is a member of the Supreme Court bar, and he will definitely get some action for me. I too was once an attorney but if you are not able to make it to Court, you must stop. This disorder has stolen my life. I refuse to take 'no' for an answer.

Thank you for your kind reply.

Ellen
 
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swampster1952 responded:
Good morning Bullwinkle,

I would be interested to hear how your suing the NMSS goes. I am not an attorney nor do I have any background in law. What can you sue the NMSS for? I don't get it...

I do understand your frustration in not being able to get the drug of your choice here in the USA. You can get heroin or cocaine or meth (all illegal but still available on every other street corner) so why not SF-1019?

Dave
 
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bullwinkle89 replied to swampster1952's response:
Dave,

I can sue them for Criminal Negligence. They know this drug works. Due to the fact that is is available in other Countries, that means that people are seeing improvements as this drug is a bio modifyer and reverses the damage done to the spine and brain. I have been studying this and Alan Osmond of the Osmond family is out of his wheelchair, and is dancing! He has to go to England to get this. I am not able to do so.

Please don't insult me about 'getting it on the street'. That is uncalled for and this drug is not wanted by people whom sell heroin, Vicodin, Oxycodone, Percasett, as it is NOT a pain killer. You have to inject yourself, sub q. That is the main reason it is not here because NMSS has arrangements with big Pharm for their new 'Walking Pills'. These drugs caused cancer in the brain, strokes in a significant amount of people whom take them. I will not bet the rest of my life on a drug that could kill me. Additionally people don't like to give themselves injections. I would inject myself I/M every day if that what it would take to get my life back.

So, yes I am going to sue them.

Bullwinkle


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