AnonymousOctober 18, 2008 at 5:12 pm
Hi JoJO, yeap it has happened to me 5 times. I am in another relapse now. The 5 were total paralysis events, and I have had about 20 relapses since all this started in aug 05. I just get 5 helliversaries to celebrate!!:D My 3 yr one is this week(for October anyways);)
The only difference between my relapses now are I know how far I can push it before I get paralyzed, then I can just take my pred burst and it slows it down.
I try to stay away from malls, large crowds and my kids schools when its flu season, or if that isn’t possible I make sure I wash my hands often and drink out of a bottle of water from home. I hear vitamin c helps during this time of year also. Take care of yourself.
October 18, 2008 at 5:15 pm
I forgot if you have gbs or cidp. Kevie has cidp and is on ivig. I have noticed since on ivig, he does not really get the full affects of sick. If there is something in the house or class, he might get a canker sore or feel tired. I suspect the ivig helps to keep him form all out getting something. But when these symptoms if you will do creep up, he does complain that as mentioned above, he is tired and his legs or back/neck are fatigued. Sometimes it is a week after treatment, so I know it is not a relapse, just maybe a response to a bug that heightens his symptoms. hope I did not confuse you.
Dawn Kevies mom
AnonymousOctober 18, 2008 at 8:16 pm
I had a relaspe right after I had my surgery and when I get sick I get relaspes. I stay out of malls too and refuse going to the ER’s when virus season comes around. Hate getting sick with bugs! My immune system is just to weak and does not handle illness to well at all
AnonymousOctober 20, 2008 at 12:17 pm
mine has never gone away. its in my legs and some parts of lower back. said it was neropathy man it hurts to point of getting sick some times. so i understand its real aggervating when you cant play with kids like use to.sorry if i seem harsh or selfish .im just not use to having folks who understand to talk to im loner and hermit. wife an 2 teens an10yr old so i just kinda pulled away from peps. due to talking behind back an staring at me when walk.
AnonymousOctober 21, 2008 at 9:59 am
thanks for the replies. this sucks. everytime i seem to improve i go backwards again. my immune system was bad before gbs now i guess its even worse. i know my family is getting tired of this(they are my caregivers). dont know what to do . i already avoid sick people. dont want to give up going out all together.i take a lot of vitamins.
AnonymousOctober 27, 2008 at 5:17 am
I hope you feel better,
may I ask what vitamins you are taking?
My doctor suggested vitamin C and iron for the flu season, but I’m also taking a multivitamin and I’m still taking probiotics because I’ve been on antibiotics recently. I’m very worried about my immune system too.
AnonymousOctober 27, 2008 at 7:24 am
Before GBS I never got ill…..very seldom did I even get a cold. If I did it might last a couple of days while my friends were down for the count for over a week. After GBS I was frightened, scared and very paranoid. I did ask the staff at the hospital to be extra careful and they already were and gave me no reason to worry. But it made me feel better to just ask politely, once I was able to talk! I am very lucky that I don’t worry about catching things again. I don’t go looking for it either and use common sense like before the GBS but I have not had any trouble and think I have not lost any of my immunity! I have lost other things that keep me still struggling but I am continuing to get better! In a few days it will be my 3rd year anniversary and I can say I have been down to zero and I am climbing back up that ladder. My walking is weak so that slows me down. I don’t push it in the larger stores I depend on their electric scooters. In the house I do get winded but rest and take a few deep breaths……I think my breathing some come a long ways from when it shut down and I went on life support! Now all the support I need is from my family and friends. I have so much more to be thankful for. Be well and take care!
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