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Thread: i spoke to my doc today about sf-1019

  1. #1
    Senior Member
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    i spoke to my doc today about sf-1019

    i spent quite a bit of time today with my doctor. this was a scheduled routine appointment, but i had some issues to address with him so he just sat down and said, ok what do you need to know.

    i have been having severe pain in my back. while i have had back pain, this is much more intense and to the point of being almost unbearable. last time i saw him, was when he gave me a script for a new wheelchair with a tilt back to try to relieve some of the pressure. since that time the pain has continued to increase. unfortunately, today he has confirmed that the rsd has moved into my spine. actually in his way of explaining this to me medically, he says rsd is actually spinal but manifests in other areas of the body. but now he says it is manifesting in my spine. this is not good news.

    so, one of the things i wanted to talk to him about was the SP-1019 that i had read about here at cc. i had been on the net and tried to find more info but couldnt really find much.and, what i could find was written in medical terms that didnt mean a lot to me.

    when i showed him the links that someone had posted here earlier, and he said he was not aware of it, i was not hopeful. he is so much into research and helping people, not only with rsd, but so many other areas. he was very interested and read what i had and asked to keep it so he could go and try to find out more about the injections. he told me not to get my hopes up as a lot of these type things come from other countries where there are no strict protocols for the safety and side effects, etc. he is going to try to research this and has promised me if he can find out enough to feel this is safe and something that would help me, he will find where this is being done on a compassionate basis and try to get me this treatment. he told me he would do all he could to find out about this treatment and help me to obtain it if it was safe and in his opinion in my best interests. i have to say i am not very optimistic now as he always knows about everything before i mention it and he has not heard anything at all about this treatment.

    i am sure he is going to take his time and try to research this before i hear back from him. he said he would call me if he was able to find out anything good. if not we would discuss his findings when i return which is the first of may. as soon as i hear from him, i will post the information he gathers here. i am hoping for some good news to be able to share with you all, but realistically not betting on it. he told me today, there is absolutely nothing he can do to help with this back pain and that he actually hopes this pans out to be something he can recommend for me. i would love to be able to come and post that SF-1019 is something that is going to help a lot of people here, so i will pass along any info as soon as i get it.

  2. #2
    I've never heard of it before and didn't find any other references to it on CC when I did a search. Can you provide any links?

  3. #3
    Senior Member
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    hi,
    when i initially found this on cc and went back to find it again, and did a search, i didnt get results either. i dont know what the problem with that is. i know this is one of the posts i read, and it does give the links that i printed and took to my doc. there is a post here somewhere and the discussion is regarding the company/researcher who is working with the treatment. according to that thread, there appears to me to be some questions surrounding this researcher and as i read it, his credibility. i really wanted that information to give to my doctor in print, but when i went back i couldnt remember where i saw it, and as with you, the search did not hit that thread. however, this link, will give you info on the sf-1019 that i found on cc.

    http://sci.rutgers.edu/forum/showthread.php?p=789943

  4. #4
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    i had to see my local doctor today. she always gets reports from my rsd doc. i have not heard directly back from him (rsd doc), but he sent her notes that say he is not recommending this treatment for me. i dont know what he found out and i guess i will have to wait until i see him again in 3 months. i knew it was a slim chance so, nothing ventured nothing gained!

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