Vitiams, Medication & Alcohol

    • Anonymous
      October 9, 2006 at 10:29 am

      I was disgnosied with MF 3/06 –
      My Drs. do not know much about Vitiams and my immune system is still out of whack – the health food store told me about a Vitiam/herb supplement called Planetary Formula for the Myelin Sheath to start growing back has anyone heard of this.
      Meds – I am taking Lexapro & Lyrica and xanax – I wonder if this is keeping my Myelin Shathing from growing back??
      Alcohol – has anyone been told not to drink wine.
      Thanks for any feedback I can get – it has been 7 months and still am very tired and my mouth, tongue and face feel awful. Felt I quit improving after 4 months – of course thats when I went back to work – stressful job.

    • Anonymous
      October 9, 2006 at 3:20 pm

      My dad has been diagnosed with Miller Fisher so I have been researching this stuff some. I haven’t heard anything about these vitamins… I have heard something about Sun Corella & Magnesium Torate. I don’t know what these are purported to do. But a nurse told my dad that she had a family member who had much success using these after he was diagnosed with Fisher. And as for alcohol… my dad is a heavy drinker and has been for much of his life. After the onset of his symptoms he stopped and quit completly until recently. He has not recovered so i am not sure if this is a problem or not. I would love to know more.

    • Anonymous
      October 9, 2006 at 8:36 pm

      [QUOTE=Stephanie]My dad has been diagnosed with Miller Fisher so I have been researching this stuff some. I haven’t heard anything about these vitamins… I have heard something about Sun Corella & Magnesium Torate. I don’t know what these are purported to do. But a nurse told my dad that she had a family member who had much success using these after he was diagnosed with Fisher. And as for alcohol… my dad is a heavy drinker and has been for much of his life. After the onset of his symptoms he stopped and quit completly until recently. He has not recovered so i am not sure if this is a problem or not. I would love to know more.[/QUOTE]

      Thanks for your response – I will try it.

    • Anonymous
      October 10, 2006 at 6:45 pm

      Sally —

      I know what you mean about facial progress just stopping. As I mentioned in an earlier post, I improved slowly but surely for 6-8 months and then improved little, if at all, in the ensuing 9 months. I’m ok. If this is as good as I get, considering how bad off I had been, I can live the rest of my life in my like this without complaint. That’s sometimes easier said than done, though, because I do get tired of my face looking like a train wreck (not that I was that good looking to start with), and I get tired of not being able to eat or drink or brush my teeth without making a mess, and I wish I could smile, and I wish I could pucker when I kiss my wife, and I wish my mouth didn’t constantly feel like I have a bunch of those cylindrical wads of cotton that dentists used to use to hold my lips away from my gums whenever I used to have dental work. That’s why I started electro stimulus therapy back in August. If that doesn’t work, and it hasn’t yet, I’ll try something else. And always will, because I’m not going to give into it. In the meantime, I never lose sight of how far I have come back in every other way over the last year and a half.

      As for alcohol, I drink an occasional beer, and I’ve always been somehting of a wine snob so I still drink a moderate amount of that. My docs know I do, and they haven’t suggested I stop.

      Mike

    • Anonymous
      October 11, 2006 at 9:29 am

      [QUOTE=Mike]Sally —

      I know what you mean about facial progress just stopping. As I mentioned in an earlier post, I improved slowly but surely for 6-8 months and then improved little, if at all, in the ensuing 9 months. I’m ok. If this is as good as I get, considering how bad off I had been, I can live the rest of my life in my like this without complaint. That’s sometimes easier said than done, though, because I do get tired of my face looking like a train wreck (not that I was that good looking to start with), and I get tired of not being able to eat or drink or brush my teeth without making a mess, and I wish I could smile, and I wish I could pucker when I kiss my wife, and I wish my mouth didn’t constantly feel like I have a bunch of those cylindrical wads of cotton that dentists used to use to hold my lips away from my gums whenever I used to have dental work. That’s why I started electro stimulus therapy back in August. If that doesn’t work, and it hasn’t yet, I’ll try something else. And always will, because I’m not going to give into it. In the meantime, I never lose sight of how far I have come back in every other way over the last year and a half.

      As for alcohol, I drink an occasional beer, and I’ve always been somehting of a wine snob so I still drink a moderate amount of that. My docs know I do, and they haven’t suggested I stop.

      Mike[/QUOTE]
      Mike – my mouth is the very same as yours – that is my biggest complaint – I use a toothpaste & mouth wash calleld Biotene which helps a little – outside of fatique, tingling in my fingers/hands and my upper arms and sometimes my back and chest hurting. My PT used a hand held machine called the Time Machine (which I bought)- it is not like the electro stem (which I had as well). Since I have taken sick leave again I will have time to try it and see if it makes a difference.
      Sally

    • Anonymous
      October 21, 2006 at 9:50 pm

      Hello,

      My fiance Ben says it’ll take a little while for the chest and back pain to go away, but he says it will go away eventually. He was diagnosed with GBS 2/05, and within the last few months, his left eye has become very droopy, and he’s complaining of other unusual symptoms. Will be getting an MRI soon to find out what might be causing this.

      Love,

      Shannon