Wondering if anyone knows, please

    • Anonymous
      July 21, 2007 at 6:40 pm

      Hello Everyone,

      I was wondering if anyone knows of a Miller Fisher video/DVD? I purchased the DVD from the foundation yet still wondering if maybe the fopundation will be making a new DVD some time soon or if someone knows where I can purchase a DVD on Miller Fisher variant GBS.

      Hoping someone knows if a DVD is in the works or any information would be helpful as family and friends have been asking and I’m still wondering if the foundation was thinking of making a DVD on the variants of GBS.

      Many health professionals in my area need more information on GBS, the variants and CIDP, I had and still have a hard time with doctors in my area mainly because they have no information. What’s even more frightening is when they turn around and ask me what is that??

      Very frightening!! The whole process is stressful and exhausting. I feel that the health professionals in my area need this information that they all should be warned of what can happen, what symptoms to look for and the most important is to listen to the patient clearly. A lot of doctors and nurses don’t take the time that alone can be very stressful. If you have any information I would appreciate it very much, thank you for letting me vent a bit as well.
      Take care Valerie 🙂

    • Anonymous
      July 21, 2007 at 8:18 pm


      Maybe you should email the foundation and ask if they know of anywhere you can get a DVD, or if there is a DVD in the works. I know they are in the process of making a DVD of teens with GBS/CIDP, which is a huge undertaking.
      Unfortunately regarding the healthcare professionals in your area, I think they tend to be the same in most areas. Many of us have hit brick walls, and unfortunately the emotional stress (distress) and, I believe, irreparable damage to our psyche (and I dont say that lightly), our trust, along with other things many health professionals have caused ,is something no one could even begin to understand unless in the same boat as some of us. Please understand that I use this as a generalization, as there are doctors who do try to understand and help if they can.

    • Anonymous
      August 5, 2007 at 10:35 am

      Thank You, Ali

      I’ll be calling the foundation to ask. Yes you are right about the health professionals some are really good and others could care less which causes us all a lot of stress and it’s the one thing we all don’t need.

      Thank you for responding, Valerie

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