New – Ist time on the forum
AnonymousMay 26, 2008 at 11:34 am
Hi everyone. This is my first time on any forum. I thought this one is the one for me! I have a million questions about the recuperating part of this scary thing [GBS]. My quick history: I became sick on 19Dec07, and was in the hospital over Christmas for 8 days, misdiagnosed with Bells Palsy and back spasms, & sent home with drugs while my paralysis increased. I was finally diagnosed with GBS on 01Feb08, and the infusions began that night. I’ve been home from the hospital since 04Mar08, and I’m not back to work yet while I try to “hurry up & get better”. I’m learning with frustration, that this is not anything you can rush, is it? It seems to have a mind of its own and, just when I think I’m starting to turn a corner, something else pushes me back. I’m feeling the “doldrums” now because I’ve made it through the terrible stuff and want to get my life back. I feel I’ve been a patient patient long enough. Through reading stories in this forum, I’m learning that everybody’s symptoms and recovery schedule seem different, so I don’t know if anybody can tell me if the weird things I’m experiencing are normal. I guess the big question is “Is there such a thing as NORMAL?
AnonymousMay 26, 2008 at 12:26 pm
Welcome to the site! That’s a long time from onset to diagnosis and then infusions. Are they sure of your diagnosis of GBS? And how long did your paralysis progress?
As far as normal, you will find a LOT of different people on here with a LOT of different symptoms/story/etc. Which is good because sometimes we are out of the “norm” of a textbook. Good luck to you!
AnonymousMay 26, 2008 at 4:17 pm
Thank you for your response.
Yes the neurologist was definite about my diagnosis. As I was having the 2nd nerve response test done, he kept coming in and looking over the technician’s shoulder saying, “Classic! That’s classic”.
My paralysis progressed from mid December to end of January. The whole month of January was daily loss of feeling. Hands and feet gradually inward and left side of face on 26Dec07, right side of face on 23Jan08. I was actually happy when the 2nd side of my face fell, because that was the beginning of the medical world actually looking for something rather than blaming my symptoms on Bells Palsy, a back pain and poor circulation. By the end of January, I had no feeling in my ribcage.
I had a signifigant phase of improvement at the beginning of April. Got my speech back, started walking without canes, and I guess almost got cocky about the whole thing. I’m struggling now with memory problems, lack of sleep [I’m “electric” at night – but hear that this is due to the nerves beginning to heal, so that’s a good thing?], hair loss, reduction of energy instead of increase, signifigant loss of vision & I can feel depression sneaking in. Gotta fight that, I know.
Perhaps these are not “classic”, but as you say, we are out of the textbook norm. I’ll keep reading other peoples stories and look for the good stuff!
AnonymousMay 26, 2008 at 4:35 pm
Hi Wendy, Welcome to The Family. Feel free to ask as many questions as you have or just vent when you need to. In “Our” dictionary there is no such word as normal, its better that way most days.;) You had a really long onset for paralysis, my first one was 2 hours. Sorry you had to deal for soo long with drs who didn’t recognize the symptoms. Take things slow, you can’t rush recovery, no matter what you do, it has its own schedule. Remember to rest, rest and more rest. It sounds like you are progressing well. Take Care.
AnonymousMay 26, 2008 at 7:23 pm
Welcome to the family! Glad you are joining us. There is a lot to learn about GBS and the best place is from those on the forum who have been there. We all have our unique stories about how the illness struck and how the recovery phase worked but one thing we all have in common is the need to rest. Take your time and do not push yourself past what your body tells you. When you feel fatigue, it is time to stop and rest. As to normal, there really is no such thing. It has to be about what is normal for you. That may mean redefining yourself but that can be fun too!! You never know, you may learn things about yourself that surprise you!
Take care and ask away. We’ll try to help where we can.
AnonymousMay 26, 2008 at 11:19 pm
I will never forget the words of my doctor when he was about to start my treatment. I asked him is this thing normal, he just looked at me and said GBS in one of the most abnormal thing you will ever witness, there is no logic behind it. He said he has treated just 10 GBS pateints over a span of 25 years and no two were similar. So that will give you an idea! So just take it easy. Let the things take their own course and you will be fine very soon.
AnonymousMay 27, 2008 at 8:58 am
That is a really long time for the entire progression to be calling it GBS, once I crossed over the 6 week mark in progression they changed it to CIDP. I will be interested to see how you progress – it sounds like you got slapped with it pretty hard! I’m glad you are out of the hospital now. Are you still getting treatment? Is your neurologist considering another round of tests for you?
Good luck and please don’t try to rush your recovery – you need plenty of rest to let your nerves heal, and that doesn’t mean slowing down to a walk from a run. 😉
AnonymousMay 27, 2008 at 11:13 am
Hi Wendy welcome to the unique group of wonderful people, I’m new here too. Rest is your best friend right nowI found that I could do everything as usual in 1 day at a slower pace, but the next day I was drained so I watched movies and slept. Listen to your body truly it sounds weird but it really knows when its tired.As it goes youll have more good days then day and as for depression well I think we’ve all been there, but we are the chosen ones for some strange reason and this to will pass. Do what you think what you can do and start from there,yes the nights are hard the body goes into recovery mode and the legs are the worst but as you said they are recovery from all this. And at 51 I’m still trying to figure out what “normal” is, to me its what you make it lol. Anyway glad to hear your doing so well and just keep on going and when your tired smell the roses they are quite lovely Brenda:p
AnonymousMay 27, 2008 at 12:04 pm
Welcome to the family. How certain are they about the GBS diagnosis? Right now rest is the best answer. However, if you feel yourself starting to regress, don’t play the “wait and see” game. Get to your Neuro asap!
Please feel free to ask any questions or to just vent your frustrations. Sometimes just talking about what has got you down help you to climb back up. We have all been there a few times.
AnonymousMay 27, 2008 at 5:27 pm
I think that only GBSers should be called Patients!!! We really need patience in our recovery. Stop looking around the corner – don’t even look for a corner!!! Just have faith that it will show up – sometime. When I got my mind off of measuring/watching/waiting for my nerves to regenerate, it was easier.
Doctors don’t even know what causes this crazy syndrome. My GBS came on alot slower that most – both times – twenty years apart. I was able to slow it down with massive daily doses of vitamin C and adrenal extract. So the fact that yours came on slower might mean that your body was stronger. I was able to fight off some of the paralysis with the “C” so I am thinking a virus is involved.
Support your body with good healthy food and rest and reduce any stress if you can. I would try and cut out the sugars and starches – they seem to weaken the body. Look for the humor is all of this. I remember my doctor (who Suzanne Sommers mentions in her book and on tv) washing his hands and saying that I had Guillain-Barre. I said, “Good – we have a name for it – now what do we do?” Funny now – looking back. He knew I had no idea what it meant. But we fought it off holistically and I was able to walk – but not well. I did not find the book NO LAUGHING MATTER by Joseph Heller until after I had turned the corner. Otherwise it would have scared me.
You have turned the corner. Visualize wonderful things to come – but be patient. Think of a butterfly – it takes time to go through the stages of metamorphosis. Forcing it doesn’t work. JUst BE……
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