Guillain-Barre syndrome / GBS

[Bambi5826]

I was diagnosed with GBS back in early October 2012. I searched the posts, but only found previous posts from 2010 and further back. I was wondering if there is anyone here on the DIS that has GBS?

It has been one hell of a road, and with further research I am doing, I guess the road can continue to get rocky my entire life. I have been having symptoms for about 10 years now, but nothing as serious as what hospitalized me.

Just looking for people to talk to who may have been though the same thing or similar.

 

[mommasita]

Oh my. I am so glad you have overcome this, but sorry to hear about the fact you still have lingering effects.

I lost my Grandmother to GBS years ago. It was very rare back then, as it still kind of is.

My husband's cousin's little boy also had this at the age of 2. They attributed to the flu shot he had a little before. I do know this is a huge argument, but it was horrendous. He was touch and go for months. He still has issues walking, has a brace, but thank goodness he pulled through.

How are you doing? Please share anytime. Again, I am sorry you have gone through this, it is SO personal to me.

 

[StitchesGr8Fan]

My great uncle had GB years ago, when it was still relatively unknown. His was attributed to getting 2 flu shots that year. No words of advice because I was young and he was already in his 70's. I just remember he was on a lot of medication, but lived several more healthy years after he was diagnosed. Hugs to you.

 

[GrumpyJR]

I was diagnosed and hospitalized in late February 2011. Doctors figured it was related to previously having walking pneumonia. I was hospitalized for three weeks and spent a month in two rehabilitation centers. Would have never thought I would have to learn to walk again! I was lucky they caught it quick and started treatments. Never had to be on a ventilator!
It has been two years and I still have residual problems. I do receive IViG treatments to help combat these which helps me tremendously. I hope to be in full remission by the end of the year. I am able to work a full time job and travel frequently. The best advice I can give you is enjoy everyday to its fullest. Somedays are worse than others. Rest and keep your stress down.
I can honestly say that I truly believe Disney keeps me going. We had planned a cruise and 5 days at Disney World just days before getting sick. I was back to part time work late May 2011 and full time by August. Trip was in September and I wasn't missing it! I made it and it was the best trip ever! It was tough and painful but worth it. Headed to Disneyland next week!

 

[Bambi5826]

Thanks everyone, for your stories and encouragement

 

[Roddy1]

I had the Miller Fisher variant of GBS this year. I had double vision, ataxia and loss of reflexes. These have improved a lot but the lingering problem is intense fatigue.

 

[pheonixheart]

A dear friend of my children who we have known since he was 8 (they're 17 now). He has had gbs for a few years now. Luckily for him he is an athlete so he is in good health otherwise which the drs say has saved him several times. I just found out last night he is in the hospital again I adore this young man he is like one of my own. He was my daughters first love (they're still friends). The look on her face last night broke my heart. I just found the community threads yesterday (I usually stick with the planning threads) and to find this thread today made me feel a bit better. I have hope for him bc he is a tough kid.

 

[gymjen]

my mom was diagnosed with guillain-barre syndrome about 4 years ago. it was a very scary and difficult 3 month period from initial hospitalization, diagnosis, treatment, then rehab but she is completely fine now and healthy. she was back to normal about 6 months after getting home from a 3 month hospitalization period. if you have any questions ask or message me and i would be more than willing to share more details