[livingwith]

I see the same story..I can not tell you actually how happy I am to hear others story about this rare condition. My mother is 56 years old, always a GO, Get it done type of person. About 3 weeks ago, she started complaining about pains in her leg, but again, she’s go-go! So she overlooked it, well as time has progressed, she started walking very clumsy and complaining of the pain worsening. Her regular doctors found nothing with tests, so referred her to a neurologist, well this doctor is ...Read the full article

[mariono]

I had the same problem. I felt achy and painy for about two weeks, then started with numbness in my fingers and toes. On Christmas night I started having the most excrutiating pain in my middle section, front and back, like continuous unending labour. My husband took me to the hospital because it was now a Public Holiday and the doctor's rooms were not open. At the hospital they proceeded to check me for everything they could. I think they used every machine on the hospital premises - ECG, X Rays, Sonarscan, CAT scans, MRI's "swallow the camera" and virtually drained me of blood with all the blood tests. After 5 days, still no diagnosis. And all the time I kept telling them, my hands and toes, and later, my arms and legs are getting number all the time, and legs getting very wobbly. It was only when one of the doctors, doing his morning rounds asked me to lift my legs and I couldn't, that his eyes went wide open and he muttered something about finding me a Neurologist. Off he went, only to return a hour later and stand at the foot of my bed and say " I can't find a Neurologist anywhere, it is New Years' Eve you know, perhaps we will have to wait until Monday ( 3 days later!!!) when the holidays are over???" PATHETIC. He had mentioned a day previously that it might be something like GBS. Well didn't he know that GBS can sometimes progress so rapidly that the patient can stop breathing within a few hours? Wait until Monday, I ask you. Well I managed to get onto my phone and asked my children to PLEASE try - and you know what??? after only a half an hour, going into the Internet and searching for Neurologists "A...." my daughter found one, Dr B at a hospital not too far away. So I was discharged and admitted to the other hospital, where they did a spinal tap and confirmed GBS. But here I learned that there is no real treatment, just observation to see if it gets worse and supportive care. After a couple of days I appeared to be stabilising, and my neurologist told me that he considered my case to be a fairly mild one, as the paralysis only affteced me from the armpits down to the knees. My lungs and throat were not affected so I could still swallow, talk and breathe on my own. For this reason he did not think it a good idea to give me the usual treatments - IVIG or Plasmaphersis because he said these would only bring on my recovery by a week or two, but there was a real danger of kidney damage and he would not like to see me better from the GBS but having to have dialysis for the rest of my life. So began the long journey to recovery. I worked very hard at my physiotherapy exercises and , all day long, made myself move every muscles that could still move, over and over again, to make sure they kept working and to keep the strength in them. The turning point came after about two weeks when I started to get feeling back in my toes ( I was initially numb all over) and every day I found I could move a little more than the day before. After three weeks at this hospital, the neurologist was fairly confident that I could be discharged, but with a lot of home nursing, a walker and raised toilet seat etc etc to help me function. So home I went, my husband took a couple of weeks off work and I had a physio come in every second day to check my progress and give me new exercises. Boy, did I work at it, even though I was exhausted and still having a lot of pain episodes. My husband had to do everything for me at first, but gradually I started to do things for myself. And after two weeks at home I found I could take a few steps without support from the walker, and so started walking up and down, up and down, as much as I could. Then came further progress like getting into the shower by myself with a plastic chair for support, doing away with the raised toilet seat, trying to do some housework, and slowly I started to function again. After three months, I could do everything I used to, albeit a bit wobbly, but going from strength to strength. After four months, I was even back to my Line Dancing, Gym, taking care of my own house and all the things I love doing. I still have some numbness in the hands and feet and in silly places like the sides of my legs and my trunk area, but I hoipe these will fade in time. Please reassure your Mom that she WILL recover, it just takes time and a lot of perseverance.

[M_Chapman]

How is she feeling today if you don't mind me asking? What is her current condition? My mother is currently completly paralizedfrom the neck down and things are not looking good. I will describe her situation in antoher post and ask questions there. Let me know where she stands?