GBS 9 Years Ago...

 In June 2001 I was diagnosed with GBS. One year almost to the day of my first anniversary with my sweet hubby.  This is my story.... 

I had gone to an amusement park on a Tuesday. The next day I had total vertigo- to the point I was running into walls at the dental office I worked at. My co workers and I were giggling thinking it was because of all the rides from the day before. I also noticed a slight tingling in my toes and feet. Later that day it came to my fingers and hands, not painful just tingly . Again I thought it was from all the rides.

My appetite had decreased over the week prior. Thursday morning I woke up and felt totally nauseated, major vertigo and very weak and tired. Weird I thought. I must be coming down with something. Didn't go to work Thursday. Friday morning I was super sick. My sister in law drove me to my regular Doctor. He gave me a PG test, (which was negative) and sent me home with some anti inflammatory prescription meds....OK????

 I could feel my body getting weaker and weaker by the hour. Literally the hour!!!  Saturday I was so weak I could HARDLY walk. My husband had to fully support me as we slowly made our way to the ER. What was wrong with me??? I could barley eat anything which was making me weaker as well.  After a "check up" they couldn't find anything wrong. EKG was normal. Normal heart and blood pressure. So they sent us home and told me to "rest". Idiots!

The next day was worse. I could not walk.  So tired, so weak, so scared so, frustrated .  No appetite AT ALL! I was wasting away an no one could tell us why. I went back to the ER...... Idiots.  Tested for Lime disease, botulism, MS MD, all sorts of blood work. Nothing coming back positive. They sent us home again with the attitude of Well, sorry, good luck to ya.  My husband said "look at her she can't even walk. What are we supposed to do?" 

 

They suggested we see a Neurologist. The one they recommend was 2 week booked out. So we scheduled. 2 WEEKS???  Are you kidding me?  My step mother called and worked her magic. She explained the severity of my symptoms and they got me in  the next day...Monday.

This cute little Middle eastern woman Doctor was the smartest person we have ever in countered in the medical field. She saved my life.   With in 10 minutes of  seeing me she told us she thought what I had was GBS. She explained it and what we needed to do.

After meeting with us, seeing I had no reflexes in my arm or legs. She order an nerve conduction study and a spinal tap to check the protein levels in my spinal fluid. She wanted some proof the back up her theory. We did both those the same day. The next day I was admitted to the hospital right away. So weak I could BAR LY lift my own head and  arms. I was almost paralyzed completely. Very scary.

I spent the next 6 days in the hospital getting daily IVIG treatments.  Plasm from donors in an IV.  I still had NO appetite and was constantly nauseated. I was very very slowly feeling a tiny bit stronger every day. Doctors were watching me very closely. They told me I was a very mild case and I couldn't even imagine anything worse. They all told me I was very lucky because if the paralysis would've made it to my respiratory system I would be on a ventilator or even life support. WOW!  

I went home with a walker and a huge plan of physical therapy to train my muscles to work  again.  I lost about 20 lbs in a week and a half...but it was ALL muscle mass. My back side was totally flat. I was so physically and emotionally tired it was awful. I had months and months of physical therapy. I had a pretty fast recovery of my muscles but I was SOOO dang tired all the time.

In September I went back to work and did 4 hour shifts. My boss and co workers were amazing to let me do that. I was so wiped out after work. I would just lay on the couch and rest or sleep all the time. Eventually I got better.  

I am now the mother of 2 kids.   A 5 year old and 2 year old. We just celebrated our 9th  anniversary and life is pretty dang good! I tire a little easier now days but not too bad. I have no perminate damage. I feel so blessed. I know prayers and faith of others got me thought this great challenge and that my Heavenly Father was with me the whole time. It is a miracle in my life.

If it weren't for my husband who stood by my side the whole time I would've never made it. I am living a full and normal life...just this past weekend we went to a nearby lake for a little cliff jumping into the water. Way fun and scary!

 I hope my story can help someone. My advice is be persistent and don't take "we just don't know what's wrong with you" for an answer. Keep pushing....it can't hurt!

mp77 mp77
31-35, F
8 Responses Jul 6, 2009

And by the way, I too was diagnosed with Vertigo! When I went to the emergency department for the 4th time trying to get my breath & not able to walk. I was told by the Triage nurse to STOP making myself hyperventilate & the doctor told me I was GIVING myself an adrenaline rush causing the numbness and tingling!!!!! His exact words!!!!! If my sister hadn't rushed me to another hospital, I would have died. For anyone who's unsure, please advocate for yourself or have someone do it for you.

Add a response...

Hi my name is Karen & I was diagnosed with GBS July 7th, 2014 After 4 visits to my local emergency, I gave up . By then my sister called me early Monday morning from work. I couldn't walk by then & had difficulty breathing. My sister picked me up & rushed me to another hospital. There I was diagnosed with GBS & spent the next two weeks in the cardiac ward. By then I was just glad that someone knew what was wrong with me. I received IVIG infusions for the next five days which seemed to help the paralysis. It had already gone up to my waist. Unfortunately, this was short lived cuz I ended up paralyzed to my neck. I spent the next 3 & 1/2 months in two other hospitals. The last one being for physiotherapy, occupational & speech. It was the hardest, lonliest time of my life. It's been nearly a year now, but I still have difficulty. My leg muscles are weak, my toes are still numb & I get tired very easily. However, I always tell people, I'm above ground & walking! .....it could be worse 😃

Add a response...

Hi, my dad is currently in the hospital for what the doctors think is Guillain Barre but nothing is showing up in any tests. Because the spinal tap results and the nerve conduction results aren't showing anything, they won't treat him. Did your doctor start treating you with IVIGs before she had a diagnosis? Thanks.

I was diagnosed with GBS by.a Neurologist. I didn't receive any IVIG treatment until the specialist saw me. That was 7 days later from the first day I went to the hospital. I then received IVIG treatment. It's also based on your body height and weight. I had lots of tests that showed up negative too, but don't give up or take no for an answer! If I had listened to that crap, I wouldn't be here! :) keep fighting for your dad! 😃

Your story gives me hope--thank you! My husband is suffering from GBS and it is so horrible to see someone you love, who has prided himself on being strong and in control, in such pain and having such low energy! He was diagnosed in July, and was in the hospital for a week where they gave him the IV therapy. Clearly that helped the GBS from progressing, and luckily he only had the tingling and the pain in his hands and feet, it never got to his internal organs. But it is frustrating because he is not really getting any better. I see from these posts that recovery can be extremely slow, but it does happen. I hope he does recover because he is an amazing person. His symptoms are worse at night, and we have noticed that massage helps relieve some of the numbness and burning, so he gets a foot massage every night!

I'm so glad your husband is getting better. Yes, it is a slow process & I know difficult. It's been nearly a year for me, & I still have difficulty. However, I had GBS pretty bad. But I can honestly tell you, it gets better. I went from being paralyzed from the neck down, to walking again. I spent three and half months
in hospital and still have nerve damage, muscle weakness etc but I'm only 48 and a very determined person. I know it's frustrating, but I think every day....I'm above ground & walking! 😄 Good luck to you both!,

I am so happy you made a strong recovery. Your story is touching. I have been looking for GBS survivors to write a story on for painresource.com. I have been doing a series on Peripheral Neuropathies, and GBS has really dropped my jaw. My goodness, the horror you guys have had to endure. If you would be interested in an interview for a featured story on our website, please PM me soon. I would love to hear from you, and find out more about your GBS, and about your life. Thanks so much for sharing, and I hope to hear from you.

Hello there...my daughter (4yrs old at the time) now 5yrs old was diagnosed Nov 28, 2011 with GBS....her story totally mirrors yours. We are now September and she has started school (Grade 1). She only makes it until lunch most days and then falls asleep from exhaustion, I would like your feed back as to your experience with it......the school is recommending that she only does half days due to this. My husband got really upset with me and the school saying that we are "catering" to this and just not pushing her enough! She goes to bed around 7:00-7:30 each night and gets up around 7:00 in the morning. In your opinion and experience with GBS, only 9 months after (she did 3 IVIG) should we push her harder or is the fatigue genuine and give her some more time to "heal".

So sorry to hear about your daughter. Although I'm older, fatigue is a big part of GBS. I can't imagine what it's like for a child who's brain is still developing. It's difficult enough for me to concentrate and remember things. Please don't let the school dictate what's best for your daughter! Only you as parents know! Follow your instinct! You'll never regret it!!

Check my blog for our Guillaine-Barre stories, pics, info, etc. Go to www.rusticramblings.wordpress.com. Choose the category Guillain-Barre Syndrome/hospitals. Scroll down (back) to the first entries. I believe the very first one is "Living in Hospitals, Part I". More recent stories in other categories mention how the GBS survivor is recovering now, although they are not linked to that category. Every GBS survivor is different. This is just one example. Life is good!