I had Miller Fisher 3 years ago

    • Anonymous
      June 26, 2007 at 11:02 pm

      I had a cough for 3 months and I was taking antibiotics, one night I had a fall and hit the back of my head, I fell like in slow motion and my legs had been hurting a lot, specially my knees and I was taking a class and my classroom was in a second floor, I tried to go up stairs and i was so agitated and my legs hurt so much that i went back home, that night I fell the next day i went to the ER and Doctors told me that I might be having an allergic reaction to the antibiotics or food, they gave me an IV of fluids and cortisone and send me home, the next day I woke up and couldn`t move anything, I couldn’t close my eyes, I couldn’t close my mouth I had no saliva and of course I couldn’t move my arms and my legs. I don`t have medical insurance, and public hospitals didn’t know what to do, I visited private doctors and they told me I might have a rare disease called GBS and I needed an expensive study and after a month I was diagnosed with MF, doctors prescribed me neurontin and that didn’t helped me because I had the feeling of a sunburn in all my skin, I was in a lot of pain i couldn’t eat for a month because i pug all the time, my neuro doctor recommended a therapist that gave me massages and move my legs and feet to avoid drop foot, because this was very expensive, the therapist visited me once a week and my husband gave me massages and exercises twice a day, also I had double vision for the first month and after that I had a bleeding in my retina that caused me to see big black spots, the spots were smaller with time but I couldn’t see colors and after 3 years I still can’t drive because I can’t see the red lights very clearly and I have something called ”Tunnel vision” and I can’t see at night, sometimes I can’t see the difference between a line in the pavement and a crack. I was paralyzed 5 months and little by little I could move my body again, my therapist used a big wood board and she wrapped my waist and my knees and put me vertical so my feet feel the floor and my legs got used to gravity again, obviously that was awful because I feel like I was being pushed from a roof and I felt nausea, after that she wrapped just my knees to keep them straight and with a walker I had to stand up and try to stay up for at least 15 minutes then little by little I had to try to walk 10 steps or more and sit down, I cried every time I did that because I felt like I was going to fall, after 3 months I could walk without help in my legs and I used the walker for a month, then I had to use a cane for 2 months and then I walked by myself although I still have problems with stairs, my face is still paralyzed and I can’t see well at night and have problems reading, because I see little spots in my eyes. my family didn’t support me during my disease, they thought I was just being lazy, and sometimes they make fun of my face, the only one who was there all the time it was my husband and my therapist who was a real angel. 🙂 that is all I can remember for the moment thank you for your time Winnie.

    • Anonymous
      August 5, 2007 at 11:06 am

      Hi Winnie,

      My goodness you have been through a lot, it’s great that you have the support from your husband and therapist and now you have more support right here from the foundation and my self. I’m sorry to hear that your family wasn’t supporting you, it’s very heart breaking to hear that family of all people would ever make fun of you being in this condition. No one deserves that kind of treatment from anyone especially their own family.

      My mom has been my care giver from the very beginning, although both my sister and brother don’t live close they are still supportive. My mom’s side of the family is more supportive than my dad’s side, my parents have been divorce since I was a child. My dad’s side, including my own dad always say the most ridiculous comments for example: When are you going to stop using that cane and be able to walk normal, I just look at them like hello, I have no idea. They have said worse I’ve learned to ignore them. Unless they have gone through it them selves or been through it with you they can’t truly understand it all.
      I still have drop foot I wear a brace, I walk with a cane it took me about 6 months to go from walker to cane. I would rather not use it it’s frustrating at times yet I’m so thankful I’m able to do what I can. That’s what I think about each day. My eyes didn’t return to normal until late September of 2003 still to this day I get the worst headaches, I still from time to time have problems with my eyes, light sensativity and also sensativity to sounds. It took me just about 3 years to get disability too. What a fight that was. I just keep positive and live life, it helps to know I have so many other people I can talk with as well as the loving support I get from those that care about me too.
      This past March was 4 years since my onset of MF GBS I too had a lot of problems with my eyes,face,hands arms,legs and feet. When I left the hospital I was with a walker, I didn’t have medical coverage either they wouldn’t allow me to take the physical therapy so I’m forever thankful to my brother and sister who set up exercises and also did anything and everything to help me start moving. Doctor’s have been horrible to me , I’ve met a few that are great, it took a long time to find them. I know it gets very frutrating and stressful at times, I still have days when I break down we all do it’s ok we’re only human. My onset was on my birthday of March 2003, what a birthday present, right! LOL! I lacked the help from health professionals, I’m still going you have to keep positive, laugh a lot it helps. You just keep going, each day is a new day and we all have the ups and downs, now you have a new family and support from all of us as well.
      Stay strong, take care Valerie 🙂

    • Anonymous
      September 6, 2007 at 12:43 pm

      Thank you Valerie for your words, it´s like a warm blanket. i feel lucky because i found this web site and i´ve read all this stories that are like my story, and also gives the extra energy that i need to go on. I visited my physical therapist and she said that my face it was better, that i had almost normal gestures again, sometimes i forget that my face is still little paralyzed until i feel tension in my lips and cheeks, i also try to laugh, is better than cry. today i have an interview for a new job, i´m nervous because i feel that people sometimes think that i´m too serious because of my paralysis. but anyway i´m going to do it, i´m afraid of taking the subway because of the stairs, but everytime i have take stairs, i always think that i´m strong, i´m going to do it very well and most of all, I CAN DO IT. the other day I drove back home because my husband had an appointment and I took the car and drove, it felt so good. it was like driving a bicycle, although I can´t see very well at night I think i´m going to try to drive only in day light. well thank you for reading me. Stay strong Winnie.

    • Anonymous
      September 7, 2007 at 12:34 am

      This all sounds so familar. Eyes were wide open and swollen and painful to touch. I am so glad they did not sew them shut. Double vision so you can not read or watch TV or even see what time it is. It is hard to recognize people each day you have to ask them who they are because they have changed their clothes. Those terrible times when trying to do something and my vision would just go blank. I did not know at that time my eyes were bleeding. I would stop walking and tell them that I was not able to see. I don’t think they believed me. Also the rug looked like it was rippled and I would stop. Working on doing the steps they disappeared and I hated to complain or say I could not do this so I would just shut them and feel with my numb feet for the stairs. They would tilt my bed upside down and that would make the pressure and bleeding in my eyes worse, while they made the bed or moved me around. The field of vision has improved like the NeuroOptomoligist said it would. The Periphial vision has got better. I have got back to driving but slow focus and light did set that back until I felt safe. It does take time and I feel very lucky that all this has got better in the 23 months since my onset of GBS MF. My husband will take me out and watch for the muscles in my left eye to sag. He will just say to me do you want to go home and then I think about it and can feel it is closing more than the other eye. Glad he is so observant! Hang in there it does slowly get better!