AnonymousSeptember 19, 2007 at 8:16 pm
Dear GBS Family:
I can’t even [I]begin[/I] to tell you how excited I am to have found this discussion board! I’ve felt alone with my GBS story for so many years…it is almost scary reading messages from strangers who are experiencing the same struggles I went through and CAME THROUGH!
First, I wish you all strength, hope and knowledge as you travel this path. I was diagnosed with GBS in 1984. I was 16. I won’t go into the gory details, but I will just say that ‘back in the day’, at least in my small world, in a small mountain community in Colorado…No one was knowledgeable about GBS and my treatment was certainly archaic, compared to what is offered today. Suffice it to say it took 6 months to diagnose my disease, 3 months in hospital and then, to add insult to injury, they stuck me in a psych hospital—because they didn’t know what to do with me—for 4 months! They felt I as ‘suicidal’ and ‘anorexic’…YEAH! I was 16, institutionalized, had lost 40 lbs and was paralyzed!
I am happy to report that I recovered and have lived a great, healthy 23 years! I’m very fit and have a very physical job—I train guide dogs for the blind at a very reputable school in California. I’m also an avid runner.
I am desperate to hear from y’all about post GBS symptoms! I didn’t experience any significant symptoms for over 22 years, other than occasional balance problems. I’ve been experiencing some really frustrating symptoms in the last year…Most notably– chronic numbness/tingling in my hands and feet. Particularly in the morning and when I’m sedentary, and often if the room is cool. The tingling and numbness gets so bad at times I cannot type, nor do I have any manual dexterity. My feet fall asleep when I run and at night. I thought I was having a cardiac problem and went to see an HMO cardiologist. He could not offer any reason for these symptoms, despite a comprehensive workup…I told him I had GBS and he just shrugged and didn’t seem to think GBS could be causing these issues.
Could GBS be the cause??? I’m seeking advice from you all…I can’t imagine that GBS could still be lurking, but I’m desperate to get some answers and some possible strategies to manage these issues.
AnonymousSeptember 19, 2007 at 11:49 pm
I am not a doctor, but those symptoms sound very similar to my begining cidp symptoms.My numbness started in my hands then went to my feet before the weakness started. You might go to a neurologist and get tested(lumber puncture and nervespeed andconduction test.)Sounds like you might just be over doing, either way seea doctor foradvice.
J Joe Flaherty
AnonymousSeptember 20, 2007 at 8:35 am
hi emily & welcome,
ditto joe. another possibility which can happen to gbsers is something similar to post polio syndrome. nothing i know to do abt it. you might try resting a great deal more lying down & see if that helps. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousSeptember 21, 2007 at 7:00 pm
Gentlemen & all: Thank you for your thoughts…I really appreciate it. I dread visiting a neurologist—plenty of that to last me a lifetime…however, I agree that is an important next step. My next question has to do with anemia. Have any of you experienced anemia issues as a result of GBS? I ask because I have also been chronically anemic since 1984. Controlled with supplements (when I take them–yuck!) but just curious if there is any correlation.
Thanks and health to you all!
AnonymousSeptember 21, 2007 at 9:05 pm
Oh Emily Sue, WELCOME!!!!!
I have sooo much to speak to you about, so many things to ask you AND so many things to tell you. I had GBS in 1985/6, respirator 6 weeks ect. A few years ago, after leading what I would say was quite a normal life ….. things started going downhill.
Tonight of all nights I cant write a long post, I have to go in a minute 🙁 . I can private message you my whole sorry story or telephone number, or you can send me yours, and hopefully we can chat.
Im so glad you found us! This sight was a life saver for me, specially since my doctors had the same reaction as yours.
Hope to speak to you soon!
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