Zinna – I was DX with Miller Fisher 3/06 ( I am 59) fortunately did not go into a comma – but pretty much everything else though- I was given IVIG 6 times after being in the hospital for 4 days – and started coming around – be careful and DO NOT LET THEM push your mother with physcial therpy – they tried to make me do 4 hrs of PT everyday and feel it really set me back – when I got home – I did water aerobics l hr and walked 1/2 hr and rested, rested, all day and they helped more than anything else. Unfortunately when I was able to start driving again I quit resting and had a really bad set back and had to have another set of 3 IVIGs and have a lot of fasical pain and eating, tingling & vision problems. Tell your mom to take every ones advise rest is the most important thing until you are totally better – the mylin sheathing has grown back. You are great for supporting her.
Sally

Zinnia
In my reading research on Miller Fisher it can happen that all is paralyzed – eyes fixed (stuck in one place), head, neck etc. This may have been what happened to your Mom. I had GBS and Miller Fisher – I was lucky that I only had one eye fixed (looking at my nose!) for a short period of time. I can’t imagine how it must feel for your Mom. she is in my thoughts. I hope that she shows continued signs of recovery.
Michelle

I know the emotional complications of MF and GBS I just had a son on 9/15/06I started getting symtoms 5 days after I had him. It hurts because I cant be alone with him sometimes can not even hold him that long. I have a 5 year old boy that came over to me and just laid his head on the side of mine and I screamed so loud because it felt like hammers hitting my face, it scared him. I had to explain how he can not touch mommies face right now, he keeps asking me if I have gotten my smile back yet:) I have to say “no not yet baby, Im working on it.” 😉 Im so lucky to have a great support group between my husband and my mom and dad. I didnt have to get a nurse, but it is really killing are income level right now. I had to drop out of school, it seems to just be cutting into our lives so badly. [B]BUT [/B]You have to just keep moving on and thanking God for the things you do have. I thank God that my baby is healthy, I thank God for my family, and I thank him for helping me through this even though its hard to understand. I also thank him for you all so I know im not all alone. Good Luck to all. Christine

My miller fisher was strange. It started with numbness in my trunk which stared to move upwards to my breast and downwards towards my legs and then finally to my feet and my tounge. then the paralysis in my face happend. First on the right side, then the next day on the left. I had treatment two weeks ago (after being ran through all the tests of course emg, lb, mri ) and it seems to be working quickly. Im on neurontin and I have aweful facial pain but it helps with the nerve pain in my legs and arms. My onset seems to be strange compared to others but we usually end up in the same place. Thank you for all of the messages it helps to know youre not alone especially with something so rare. XOXO, Christine

Thank you Gene i am on neurontin and its seems to do great for the nerve pain in my arms and legs it just doesnt seem to do the trick for my face. It feels like steel hammers are pounding my skull anytime someone touches my face, its very painful. Im currently on 300mg 3x a day. I have only been on them for a couple of weeks. Do you think I should talk to my neurologist about taking more? Thank you again, Christine

I have been diagnosed with miller fisher syndrome. my question is did anyone else have extreme pain in thier face and what were they able to do about it.
thanks, christine

I have joined the GBS Society and have received names of Miller Fisher patients and their phone numbers. I would like to be able to also know if you have a way of finding people with MF thru email. I have had it for 8 weeks now and am wanting to find out if there are other methods of treatments I should be receiving, ask questions of systoms, etc.
Thank you,
Sally Sobieralski