Newbie :-) (long)
AnonymousMay 3, 2007 at 11:19 am
It was very interesting how I found this website. I was diagnosed with GBS August 2005, what a scary experience. It started out with my hands and fee feeling tingly. I swore up and down that it was just them falling asleep, but it wouldn’t go away. I then thought I had diabetes, could have very well been bc both sides of my family have it. I was scared to tell anyone or go to the doctor. A little over a week later it got so bad that I was scared to drive myself to work. At work I couldn’t concentrate bc I was so worried. My handwriting is not that great to begin with, but it got so much worse. It looked as if I was just learning to write. I finally went to my primary doctor and he recommended I go see a neurologist bc the blood test cleared me of anything he could treat me for. I ask for a referral at the front desk and the girl tells me 3-5 days! I was upset, but thought I could handle it. I waited two days too long, the feeling spread up to my elbows and up to my shins – I was so scared. I called up the doctor’s office to get the referral and she again told me a couple more days. I cried and pleaded to her that I can’t walk or write! I needed this referral now!! So, they had it for me that afternoon. When I went to the neurologist I was in denial. My brother drove me bc I couldn’t drive. I tried to fill out the medical forms, but I couldn’t! It was horrible, I just broke down and cried. My brother filled the rest out of me. When the neuro told me that I needed to be hospitalized I was in shock! Then they told me later on that I would be there for at least a week! I know a lot of stories here are of people in much more serious situations, but this was devistating to me. I was horrified by this. I fully recovered my arms and leg use in a week. They gave me the intravenous for 4 days. I am so thankful that I am here now. My fiancé told me months later that he thought I was going to die, he has never seen someone so sick. For weeks after I was released I had pains in my back, neck and legs. I then started to get double vision in my left eye, which eventually went away after treatment a couple of weeks later. Almost two years later I am still fearful that GBS will come back. I recent was diagnosed with Labrynthitis and just this past Tuesday my primary doctor (a different one from before) diagnosed me with a B12 deficiency which requires a shot every week, then once a month. I do wonder if any of these “weird things” i get are bc I had GBS. Has anyone experienced this b12 deficiency after being diagnosed with GBS? I mean this was almost 2 years ago, but who knows. I havn’t been back to me neuro since Sept. 2005, i guess I just want to block that part of my life out bc it was so scary. I read everyone’s story and my heart goes out to you all! You are all in my prayers!! Lots of love! Melissa xoxo
AnonymousMay 4, 2007 at 1:52 pm
In my uneducated opinion, you are experiencing what I have been. Of course, I am 10 years post and did not get IVIG (don’t know why – stupid doctors). I did recover at home after a few months. Over the years I have always experienced fatigue and strange feelings in feet and hands. The past couple of years I have gotten worse and went to a new neurologist (because of insurance). I go back Monday for a final review of my blood work, but 1 month ago he told me I was on the low side of vitamin B. Long story short(er), I have been taking some wonderful mega vitamins and I feel so much better. Still get the fatigue some, but the zapping and stuff has really settled down.
Lots of people here take Neurontin and other meds (I was on amitryptiline) for the zapping and tingles. I stopped my amitryptline this past month when starting the vitamins and it is okay. I mainly stopped because of the weight I had gained, the neuro was scaring me with diabetes talk. I have lost 10 pounds in the past month!!!
Anyway, please don’t hesitate to ask any questions here. Also, I would like to suggest to do lots of reading and searches. A return trip for a check-up to a neuro would probably be a good idea.
AnonymousMay 5, 2007 at 12:47 am
Hi Melissa, Welcome to The Family. a few weeks ago i was told by my pcp that my b12 levels were low, i’m on high b supplements now and doing ok this week. i had a mild paralysis event last week, but doing better this week. i take neurontin for the nerve pain, zings and sparkler feelings in my hands/feet. since i have been taking the supplements i have decreased my neurontin doses during the day-good thing. i do believe i would have been in the hospital last week if i weren’t on the high b sups, the only part that i could move on my own were my shoulders, which usually sends me to the hospital. keep a positive attitude and you will go far in recovery.take care.
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