Quite A Few

I will email Maggie and make sure she knows the forums are back up.

Jerimy

Now that threw me for a long time. Because Maggie has Brandy. And then there’s Brandy, who isn’t Maggie’s Brandy. It made life interesting in my early days!

As this Thread is new again, I’ll post a success GBS story.

I went from pins and needles in my fingers to ICU in 6 days. Seven weeks later I left hospital walking like a tired duck – only because a wheelchair would not fit into the caravan I was living in (we were building a house at the time). After leaving hospital, I did not experience any more pain. I had the strange zings and zaps and it was a while before I walked properly and the weird fatigue lessened. In the interim, I learned many things – like how to wash sitting down (I figured out where my face was and aimed the water at it).

The only ‘cold shower’ so to speak is the effect on relationships – especially if others do not understand the strange fatigue.

I heard back from Maggie and she knows the forum is back up. She may poke her head in anytime now 🙂 Jer

Hi!

I’d love to hear some more success stories! I’ve been alarmed lately by the amount of people who have had terrible relapses. Does anyone know if relapses are the norm?

I came down with CIDP four years ago. THe doctors kept telling me all of my symtpoms were in my head. I finally collapsed and was sent to the hospital. They told my husband they were going to send me to a convelescent hospital (I was 35 at the time). Before they could send me away, I finally saw an experienced nerologist who knew immediatley what I had. I started plasma pheresis and continued on this course of treatment for four years (I had a total of 106 pps).

At my worse I could hardly breathe, lift my head or open my eyes. Now I am doing great. I’m not normal, but I’ve made huge improvements. I take care of my children, I work out at the gym five times a week, I walk up stairs all day (we live in a two story), I live a good life. I’m still taking three norco a day for pain and quite honestly, energy. I also take two Cellcept a day (1000 mgs). It’s so nice being off of the pps. I can’t wait to be even better than I am today!!!!!

Hope to hear lots of happy stories!!!!
God Bless You All:p

hi!, i am just new in this forum…

i am a gbs patient for 2yrs and six months now, i often use my wheelchair bec. i easily get tired using my walker.

my rehab doctor tells me that it might be my full strenght for my golden period is already lapsed..

is that true?

what do you think? can i still walk without a device?

i have a daughter she is 3 yrs. old now, she was only 8 months when i got this gbs… can i still have a baby? Just asking….:confused:

I am new to the forums. It is quite helpful to read the information and know that I am not still imaging my symptons. I was dx with Miller-Fisher variant of GBS in March 2006. I got a quick diagnosis thankfully due to my GP telling the ER doc, “She needs to see a neurologist”. That was a Wednesday. Wonder of wonders, I was able to see a Neurologist the next day, Thursday. Within 5 minutes of time with her, she says I think you have GBS. I had heard of this once, but really didn’t know what it was. She told me to go immediately back to an ER, but not the one I was at the day before 🙂 , but go to a teaching hospital. She provided me with a letter to present to the ER basically stating rule out GBS or Meningitis. After another 12 hours in the ER, meeting the attending neurologist and many many residents, and getting the lovely spinal tap, I was admitted and placed in the acute stroke unit so I would have close monitoring. At this point, I was so tired and bewildered. I did not have a real clue as to what was going on . My symptoms as this point beyond the extreme fatigue, was my left arm was almost fully paralyzed. Right arm numbing up, feet starting to numb up, left eye lid drooping to almost being closed, double vision, and tightness in the chest. So Friday night I recieved my first IVig treatment and then for the next 4 nights. The progression pretty much stopped. I left the hospital on the 6th day of my stay. It wasn’t until a week later when I was able to do some searching on the internet that I realized how VERY LUCKY I was to get such a quick dx and IVIg treatment. Granted I left the hospital with sever double vision, which last for another month, and my arm still wasn’t right – but I could walk, talk and did not have to be put on a vent. I was at home and I went back to work a week later. I still have symptoms, strange pain, numbness, tingling fatigue that seems to be sudden onset some days. I sometimes go – why am I so tired. Then I remember GBS It interferes some, but I try not to let it.

Hi and thanks for all the success stories!

Today I’ve been celebrating a new trick and want to share it with all of you, knowing you will understand what a big thing it is! I’m in my 9th month of GBS and yesterday had to say goodby to my home p.t. — very sad for both of us. However, to end on a good note I asked her if I could try walking using only one crutch — AND I DID IT — not far, but I did it!! Now I’ll go on to out-patient with renewed energy — can’t wait!

Dear Barb,

Fantastic News, congratulations, I hope you see things improve daily.

Congrats Barb on the progress 🙂

Jerimy