i’m new – maybe give hope?
AnonymousJuly 26, 2006 at 11:37 am
i’m new to the forum & just wanted to share my story as hope for others.
in the beginning of november 2005, my family & i went on a cruise. the first day of the 8 day trip, i fell asleep leaning over in the car seat. when i woke up, my pinky & ring toes on both feet were numb. i thought it was just the way i had been sleeping. they never recovered feeling. throughout the next 7 days, the numbness progressed to all of my toes, the balls of my feet, and my ring & pinky fingers on both hands.
2 days after we got back, i made an appt with my regular doctor for a monday b/c the feelings were getting worse. they took blood & just told me to watch my symptoms. while waiting for the bloodwork that week, i got worse & worse. the numbness moved to the entire palm of both hands & my fingernails, my torso, tongue, gums & crotch were also numb. i had started to develop weakness. brushing my hair, getting in/out of bed, going up the stairs, getting in/out of my bra, carrying my 2 year old child & walking were all getting harder to do. my bloodwork came back & they told me i had mono (i remember having some upper respiratory symptoms the prior weeks, but none of the fatigue associated with mono – this was also my 2nd time having it since i had it in high school over 10 years ago).
my mom, a nurse, had been researching like crazy as my symptoms worsened & worsened. one morning that week, she called me & told me to look at the GBS website. it was as if the website was talking about me. all the symptoms i had been having were there in plain writing. that scared me so much b/c i realized just how serious it could get if GBS was what i had…
my regular doctor was still not very concerned, even when i mentioned it could be GBS & just wanted more monitoring of my symptoms, so i called a neurologist on my own. that friday, i went to the neur. & they were not ready to diagnose me yet with GBS even though i mentioned it several times. at that time, i still had my reflexes… so he ordered more bloodwork & an mri to rule out anything else neurological.
over the weekend as i waited for my bloodwork to come back & for my mri appt, everything just kept getting worse. with thanxgiving holidays that week, i was starting to feel desperate b/c no one would give me an answer & help me. my regular doctor was out of town & so was the neur. that had seen me the previous friday. i called frantically to the neur. office & forced them to read my mri results ASAP. when i finally got to speak to someone about them, i ended up breaking down over the phone with the stress of it all. he told me to come in first thing the next morning to see me before the long holiday weekend. thank goodness.
when he saw me, he almost immediately diagnosed the GBS. i could barely walk, had lost my reflexes, couldn’t feel the pinpricks in my feet & couldn’t hold any arm or leg positions when he applied pressure against me. he told me to go straight to the hospital to be admitted – don’t pass go, don’t collect $200…
that was such a relief. as scared as i was of having GBS, at least someone finally listened to me & had decided to help me. i cried as much out of relief as fear…
i was in the icu for one night, then moved to the dialysis ward for 2 more nights. i had 4 plasmaphoresis treatments & one of those electric shock tests on my legs during my stay at the hospital. the icu nurse actually laughed at me & questioned whether i was really a patient b/c she’d never had anyone walk into her ward before 🙂 my breathing was less powerful than normal, but i never had to be on a respirator, thank goodness. my stamina was completely gone. when physical therapy came by, they had me try to walk on my tiptoes & i couldn’t. they also had me walk up 6 steps – the nurse rushed to my room afterward b/c my heart rate had shot up so drastically with the effort.
it wasn’t until the beginning of february that i realized i didn’t think about my extremities anymore. previously, i was obsessed. every waking thought was about what i could or couldn’t feel with my fingers & toes (socks, shoes, pens, clothes, etc), my strength & ability (to walk, write, play with my son, go up/down the stairs, button/zip things, etc), & when it was going to go away…
i feel really blessed & i feel that God was completely the reason i am here & feeling like i am perfectly back to normal. the way some people’s cases start over a few hours or days to a coma, i am so thankful that didn’t happen to me. on our cruise, we went to belize. if i had been stuck there with GBS, who knows what would’ve happened. my case was slow progressing so i had enough time to get back to the US & find a dr who knew what he was talking about. also, my body responded so well to the treatments. just that week, they had 2 other cases of GBS that came in to the hospital after me & they were much worse (respirators required).
my mom is always cautioning me about relapse. i guess i feel invincible since i healed completely from GBS so quickly. can anyone give me insight into relapse? does it usually happen only if you have residual symptoms? can it happen to anyone? i am 30 & female – will this be of benefit to avoid relapse? do i need to be worried every time i get a sinus infection or cold that it could lead to another GBS?
thanx for letting me share my story & hopefully it will help give someone hope that complete recovery is possible. sometimes i feel bad b/c i didn’t get it as bad as others, but then i just feel blessed b/c my 2 year old & husband still have me as i always was – healthy…
AnonymousJuly 26, 2006 at 8:05 pm
Welcome to our family, glad to hear that you finally got a diagnosis and are doing better. I believe the relapse rate for GBS is 5% so you have a 95% chance that you will never have it again. Gene will have to let me know if that information is wrong but I think it is correct. I hope you find the information and support you need here, I came here almost 3 years ago and never left 🙂
AnonymousJuly 26, 2006 at 11:46 pm
hi solucky, welcome to the family. i’m glad you have had a good recovery. keep up the positive attitude. yes relapse is possible in healthy gbsers. i have had 4 paralysis events since last aug. my last one was in may. they have all had various triggers. just beware of what your body is telling you, rest and don’t over do things. as you know things could be worse. take care.:)
AnonymousJuly 27, 2006 at 6:57 am
hmmm.. this one will be a problem. i have [U]never[/U] had good nutrition. my idea of a good meal is one that comes in a box (ie, mac & cheese, any type of pasta with sauce, hamburger helper, etc) or pizza 😮 i do take vitamins, so hopefully that will help keep me a little more “nutritious”…
thanx for everybody’s welcome. i doubt i will be able to stop coming back to the forum now that i found it. it is hard to read others’ stories, though, knowing that they are worse than mine & there’s nothing that i can do about it…
it seems like the forum is a very helpful & resourceful place to be. i’ve never joined one before, but i can see why people like them. you don’t get the normal website mumbo jumbo that has to be “perfect” to avoid lawsuits. you get real life, real experiences, real people… i really like that.
thanx again, lisa 🙂
AnonymousJuly 27, 2006 at 7:30 am
hi lisa & welcome,
glad to hear you made such a complete recovery. 3% of us will get a 2nd attack of gbs. i suggest you do not over stress yourself, eat healthy, & stay away from what you think may have triggered your gbs attack. your immune system has not changed in respect to making you immune to gbs. natrually it is your body, your call. take care. be well.
gene gbs 8-99
in numbers there is strength
July 27, 2006 at 7:58 am
Hi Lisa: Welcome to the forums. I am glad you were finally diagnosed and treated. I have had GBS 3 times, once in 1959, once in 1989 and again in 2002. I was never on a respirator either. I wasn’t treated in 1959 since there was no treatment but I was young and recovered in about a year and went on with my life. I believe stress has a lot to do with it. I was pushing myself a lot in my job and worrying a lot in 1989 when I had another episode. I recovered from this one and went on to ballroom dancing and my regular life. I had more stress in 2002 when my mother had died and I had a very stressful job and got it again. I am recovered now and retired. I still can’t go up and down steps without holding on to something and fatigue is a problem but I am so fortunate that I can do what I need to do and enjoy my life. Hope this doesn’t happen to you but try to avoid stress and worry if possible. Good luck.
AnonymousJuly 27, 2006 at 8:18 am
Our story almost seems to match to a T. I am recovering very well from my attack in February, however, I still have some residuals. I am on nortriptyline for the abnormal sensations in my hands and feet. However I have returned to work 3 days a week, and intend to return to 5 days in September. I watch how much I do in a day, and I dont schedule myself to the max like I used to. I have two children to raise so this can be challenging, but I know when I start overdoing things my residuals flare. I also believe in good nutrition. I ditched my supermarket vitamins and invested in good absorbable ones, and I eat healthier now than ever. I also have continued my physical therapy regimen at a gym two days a week to keep building muscle. My heart rate was going up w/little exertion in the hospital too! Hope to hear more from you and I am so glad you are doing well.
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