Miller Fisher Varient Thoughts and Questions

    • Anonymous
      March 21, 2008 at 2:44 pm

      Great information on experiences of MFS, new thoughts….


      I am new to this site and have to say the information I have received thus far is awesome. In general the symptoms that I had relate as a perfect match. Now I will just have to wait this out and hopefully be back to normal in weeks or months.

      Right now I am in week 5 since on set of very first symtom and 10 days since I checked out of my 5 day hospital stint. I am still numb and cross eyed. I have noticed that where I would have a “good” day then a “bad” day, I have moved forward to pretty much all good days now. Sleep is much better now, I went from getting maybe 2-4 hours sleep right after my hospital stay to almost normal sleep (7-9 hours) Headaches still predominate in the AM, but are controllable. Just tried popping some Shark Liver Pills yesterday and my wife also purchased someting called “Myelin Sheath Support” at the local Vitamin Cottage. I have not taken any of the Sheath Support yet as I wonder if I should wait til I start to get nerve function back?? Wife also came home with “Host Defense” a mushroom product that supposedly increases NK Cell activity… I have not tried the mushroom item yet, as I have not run by my Neurologist. Then too, she told my not spend my retirement on some of this stuff. I guess any thoughts from the field on this?

      Still wonder how I could have got this syndrome. Anyone heard of the Herpse virus being involved? Weird but on two occasions as I was coming down with this I took a total of two Acyclovir tabs and my symptions actually seems to ramp up after ingestion…. Maybe my imagination. Then too, I work for a processed food manufacturer and sample samples all the time. Maybe another relationship?

      Just more food for thought.

    • Anonymous
      March 22, 2008 at 12:04 pm

      Hi and welcome Mich,

      I wouldnt put too much into suppliements , although at normal doses I think it cant do any harm – I think thats what the general consensus has been on the forum for years now. Advice given is right, dont spend your retirement on any ‘sure’ things, also a thing to remember is that some natural remedies have been proven to e[FONT=Calibri][SIZE=3]xacerbate some symptoms (and there have been a lot of money making schemes promising improvement – there is nothing for improvement but time)[/SIZE][/FONT] I will try and remember to look for some of the older threads where we have spoken about homeopathic remedies etc. and how some of them arent a good idea (Our old forum was hacked and we had a wealth of info on there that I know we could have accessed for you).

      with regards to herpes/shingles …. there are so many of us on the forum who have either had it before, or gotten it after GBS. I have suffered from it since around 91, after GBS, and do take Acyclovir when I feel an outbreak start (it effects my left hand side), and I have to say that the Acyclovir prevents the intense pain and breakout of my shingles, and since taking Acyclovir, my outbreakes have lessened. However that doesnt mean anything as different people react differently to different meds, and yours could very well ramp up your symptoms.

    • Anonymous
      March 24, 2008 at 2:27 pm

      Thanks for the update. Recovery is frustrating cuz it is sooo slow.