Forum Replies Created

  • jane-kriskey

    Member
    January 8, 2021 at 8:54 am in reply to: EAP and Right to Try

    I agree with you, there is no place to get info on this. None of the ALS sites are any help including this site. I would think this site would have info for us. We are left floundering with no help. I find this very sad to say the least.

  • Every time I check the status of drugs I get the same old same on still in trial yadda yadda, Never do I see that you can use the “Right to Try” act and if you do try the drug companies DO NOT have to give it to you. My Daughter’s doctor told her this law was already on the books, under a different name, but our president brought it front and center, but did not take it far enough to include that the drug companies had to give it to you at a cost that is affordable. So you can ask for it and never get it.

  • jane-kriskey

    Member
    September 7, 2020 at 10:23 am in reply to: Berberine and TDP-43

    Every day I read about something new that could do this or that! and I wonder if they have this data base now, where all research is available, why are there so many articles about all these drugs but none seem to be researched together. So you want to take this one you read about, then the next day you read about another and you think wow I should take that one, and that goes on and on. So we get confused as to what one to focus on. I just want to give my daughter all of them because who knows what one might be the magic one. We are grasping at straws and have no idea where to go.

     

  • jane-kriskey

    Member
    September 7, 2020 at 10:17 am in reply to: NPR story on AMX0035

    Thank you for that it was very enlightening and to think 2 young men in their 20’s with a small company could do this but big companies have not been able to over many, many years. That tells me it is not a money maker to them, which seems to be what drugs are all about.

    Are there trials going on now for AMX35?

    Again, thanks and I hope this will come out soon to everyone.

  • jane-kriskey

    Member
    September 4, 2020 at 11:36 am in reply to: Lyme Disease vs ALS

    My daughter was tested for Lyme,as we live in the country also and she was bitten a few times but got treated immediately, They did the test twice but as hopeful as we were it was not Lyme, but I cannot hurt to get tested. I have several friends with Lyme and one was almost a vegetable when he found a specialist inLyme and within six months he was walking again and running and almost back to normal. Another, had many physical issues and found it was Lyme, but in her system for so many years she will never be 100 pr cent herself but she is now functioning and has some bad times but without this diagnosis of Lyme, who knows where she would be.

  • jane-kriskey

    Member
    September 4, 2020 at 11:27 am in reply to: CNM-AU8 Trial

    There are so many trials going on now it is hard to figure out which are best, My daughter is starting a trial for  Clenbuterol next week and I was happy about that, then I read about others and I think this one sounds better so we are a bit confused at this point. This one does not have a placebo, which we like and it is a pill. So I hope they all work but right now we are on the fence. I just hope they come up with one they all agree on after these trials are over and they do it quickly. Some are drugs already on the market for other things and I wonder so why can’t she take them, they are safe and might be something that she will benefit from. So again, back to square one, what to do??

  • jane-kriskey

    Member
    August 27, 2020 at 9:31 am in reply to: Use of Off label treatments.

    I found Tudca on Amazon and then did some research and to me is seems like no risk in taking it. My daughter goes beginning of Sept to her doctor at Duke and she is going to ask him about his thoughts on it. But I think she should take it as it is not harmful and why not? The Right to Try is really nothing because the drug companies DO NOT have to give it to you and they won’t because they will want to make millions on any drug so why would they give it out and if they did it would be so expensive you could not afford it. It is the drug companies that need to be reigned in. I wrote 8 drug companies, 16 hand written letters, to the co’s and the coo’s of the eight companies. Got no responses. Not even a form letter to acknowledge receiving my letter. Not enough money in ALS.

  • jane-kriskey

    Member
    August 26, 2020 at 11:22 am in reply to: Best Advice or Information

    My daughter gets very little help and has been asking for a social worker to visit for months with no results. She does get great equipment for the ALS foundation which has been a great help.I feel we have to spend almost all day on the computer doing our own research because nothing seems to be easy to access. One example is the Right to Try act. There is nothing to be found about that. I want to Know why the Neuron program is not being talked about more and why it isn’t in the Right to Try. I feel she will die before we get the info.Basically, we, as  family, feel she was diagnosed, told Right to try is there but where and how?