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    • #15104
      Gunnhild
      Participant

      Hi guys ๐Ÿ™‚ Iโ€™ve had celiac disease all my life and iโ€™m on a strict gluten free diet. Itโ€™s interesting to read your experiences with gluten free diet. I myself have nothing to compare with.

      I donโ€™t understand the advice the nutritionist gave you, Jassim. Gluten free alternatives are full of sugar. Really rubish for diabetes. I would rather say go for low carb diet ๐Ÿ™‚

    • #13810
      Gunnhild
      Participant

      This could be a quote Jonathan!

      You need to visit hell more often and see yourself dominate it.

      I think itโ€™s the coolest thing Iโ€™ve seen in a long time.

      To be able to master the darkness you must go all the way down into the hell to experience it… then rise again and you know more what to do to avoid hell. Goes with most aspects of life I think๐Ÿ™Œ๐Ÿผ๐Ÿ™Œ๐Ÿผ๐Ÿ™Œ๐Ÿผ Thank you guru Jonathan๐Ÿ˜

    • #13808
      Gunnhild
      Participant

      Hi ๐Ÿ™‚

      We all see life in a different way, but is there someone who really donโ€™t prefer to have hope in something (for as long as it lasts) rater than no hope at all? Iโ€™m just curious because the years that I had no hope felt like hell to me.

    • #12923
      Gunnhild
      Participant

      I just want to say thank you for everyone participating in this discussion here in the forum. Lots of people google to find information about treatments for FA and they find us here. So please keep it up ๐Ÿ™‚

      As you might know I also take Imukin injections and for the last 3-4 weeks I’ve had some Imukin side effects increasing. I haven’t had any Imukin side effects for many years so I think it’s the combo that triggers it. It’s not bad. Just feeling sleepy, like a hung over and some mild flue like symptoms. Since I work full time it bothered me so much that I’m trying to find a better balance between the injections of Imukin. I now wait 2 days between every injection. Etravirine is unchanged 2 times per day. Oh well, this info might only be useful if you also take Imukin but not so interesting for the rest.

      Another nice improvement I’ve noticed about Etravirine. This took maybe 5-7 weeks of treatment before I was sure of it. Bladder control is back! I don’t often hear people talk about their bladders in public but we all have it… ๐Ÿ˜› and the nerves are controlling it very elegantly. Or at least they should. Those nerves might also get affected by FA. Anyway, it’s a very nice improvement ๐Ÿ™‚

      Anybody else care to share? ๐Ÿ™‚

    • #12640
      Gunnhild
      Participant

      Hi guys ๐Ÿ™‚ So much interesting going on all around the world now. Good luck to all who is just starting on Etravirine. Hope you will update here.

      After almost 2 months I no longer have any side effects. The improvements are still there. (scroll up and read my previous posts). No choking in this periode. I’m very excited about that. Makes life easier. The last few weeks I’ve noticed that it’s easier to take a step backwards. For example taking a step back to be able to open a drawer in front of me. I really wish the walking would keep improving, but there have been no changes for the last month. Still hoping for more. I see that others have great walking improvements on Etravirine. That’s fantastic news ๐Ÿ™‚

    • #12552
      Gunnhild
      Participant

      Oh, am I the first commenter here! I hope there will be a good tqlk about this important subejct.I was diagnosed at 31 so I had already started my career a while back. When the symptoms really started to trouble me I had to adapt the work around me. Let go of some tasks and get good at new tasks. Ten years after the diagnosis I still work full time but my work day looks much different now. My education is physiotherapist but today I work mainly on a computer.

      There is so much we can do even if the body is not cooperating. I don’t really know what to say next ๐Ÿ˜› It’s such a big topic and I can go on forever about it. I’m curious about others experiences.

    • #12359
      Gunnhild
      Participant

      Thanks for the update @dobiiv2 Fingers crossed for much more effects to come.
      Ousama is travelling in Europe for 2 weeks. He says he has effects and he will update us when his holiday is over and heโ€™s back at his computer ๐Ÿ™‚

    • #12287
      Gunnhild
      Participant

      I don’t have that on a daily basis, but when I get a cold I often get a dry cough that lasts long after the cold is gone.

    • #12218
      Gunnhild
      Participant

      Hi everbody ๐Ÿ™‚

      A lot of people interested in Etravirine read this forum and then have a lot of questions. You can become a member and ask your questions here. It will help other people to read the whole discussion here.

      If you have trouble logging in you can click on the button on the right, the one with an envelope on it, and send a message to the moderators. They can help you.

      Somebody is asking me what trial I am in. I just want to clarify that I’m not in a trial. I’m doing this on my own to see if Etravirine can benefit me.

      And lastly an update: I ‘ve been taking Etravirine (drug name Intelence) for a month now and things keep happening. What makes me very happy is that overall stability has improved and also walking! I can almost not believe it, and I’m very excited to see if it keeps improving in the future.

      I realized yesterday that I haven’t had any caughing incidents in one month. Feels like I have more sensivity in my throat… If that is the case, that makes me very very happy ๐Ÿ™‚ Eating stresses me out because of the coughing.

      The last two days walking down the stairs has been much easier. I had almost no rigidity in my muscle on my way down. I smiled all the way ๐Ÿ˜€

      Fingers crossed for more effects to come!

      Any news from others taking Etravirine?

      • This reply was modified 1 year, 2 months ago by Gunnhild.
    • #12078
      Gunnhild
      Participant

      The fact that you dont need insulin now makes it so much interesting! Its hard for placebo to be the reason for that ๐Ÿ™‚

    • #13248
      Gunnhild
      Participant

      Hi Aron ๐Ÿ™‚ I don’t want to speak for others, but I suggest you ask the facebook group for that.Open for everyone with an interest for Etravirine.

    • #13249
      Gunnhild
      Participant

      Hi Richard ๐Ÿ™‚ At least two that I know of. Seems like you might ask the same question in the facebook group that Gian Piero is linking to.

    • #12286
      Gunnhild
      Participant

      Chills and a light pressure over my ears is what Iยดve noticed. But the last 2 weeks I’ve rarely noticed it. I will take blood tests next week. For now everything feels just fine in the body ๐Ÿ™‚

    • #12145
      Gunnhild
      Participant

      That is exciting news Luciana! ๐Ÿ™‚ What is the price for one month treatment in Brazil? Is it her neurologist that prescribed it?

    • #12059
      Gunnhild
      Participant

      No I just broke my leg… just kidding ๐Ÿ˜‰

      I dot know the limit to how long I can stand without support. Probably for minutes. 5-10 I dont know. Walking without support; 1 or 2 steps… I’m weird ๐Ÿ˜›

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