lucky me gbs since 10/07

You WILL beat it!! You have a great “can-do” attitude! Welcome to our GBS family! We are glad you found us!
Best Wishes from Iowa….

Hi Dean, Welcome to The Family! Keep that Attitude!! Good to hear you are home, rest as much as you can, don’t push the recovery process-it doesn’t like to be rushed;) It sounds like You have a Great Mrs!:) Take Care

I’d bet you would have rather won the lottery? 🙂 You are smart to do research and learn from others afflicted… kudos to the intelligent patient who takes time to learn. Hey, don’t let some of these threads scare you -I believe 75% of those afflicted fully recover without residuals!

The odds are stacked with you, so you may still be a lucky person. Besides, I think GOD likes you, else you would be dead or afflicted with something even nastier 😉 The way I look at it, I was lucky to receive GBS in lieu of some other gift of fate. Perhaps there are greater plans for us to do someone good in the future?

[SIZE=”3″][/SIZE]Yes, you are going to beat this. What movement do you have?
Thank heavens for computers and this forum as it is very helpful to one and all.
will be thinking of you.

Good morning Dean.
You as I were blessed with a light case of GBS> We both are walking. I got mine a year ago last month from a flu shot. I still carry some numbness in my right foot. I have no pain as others do but I know I got it for a reason. It has made me very humble and to appricate the chance to walk and to have expierenced what it is like to be crippled. going from crawling to the wheelchair and the walker and cane. To expierence how many look at a handycaped person. letting me try to open a door or letting me stand when I was useing a walker. I never see the word luck connected with GBS. We all have and are being blessed in so many ways. I will give back cont every day and share every chance I can of hope and healing. The people here are all angels giveing unconditionally to others. May your holidays be filled with love & happyness and have a MERRY CHRISTMAS and give your caregiver a BIG HUG from me (Steve)

Dean it’s nice to meet you, welcome to our family.

Jerimy

Thanks for keeping the positive flow in here…we need to stay on top of our emotions. Not to say we should invalidate them, but feelings aren’t facts!!!!

Peace, Dave

Hello Dean . Ive had this Gbs for 8 and a half weeks ,and today I walked 25 feet with a cane and 10 feet with no cane . I like you am going to appreciate a second chance to walk.
Ron

What a difference a day makes!!!! Every day IS a gift and with it comes a choice. Sounds like you make good choices!!

I was diagnosed after a strep virus in Jan 07 with GBS…then CIDP…now back to GBS????? Whatever the dx….I am on the mend and back to work 2 hours/day with a walker or cane; and I plan on using those only through the winter.

“I can do ALL things……….” Philippians 4:13

Blessings to you,
Brenda

deanop,

nerve regrowth is not always consistent nor complete so time to recover can’t be acertained. reflexes usually come back. neurontin for pain. take care. be well.

gene gbs 8-99
in numbers there is strength

Dean ,I was in the hospital for 5 weeks at U of M. The first two weeks I slept with my shoes on because of the needles.I stil feel the buzz as soon as my feet hit the floor.
Ron

Dean my wife is a whole foods vitamin nut. One of her papers has that taking b6 b12, frlic acid, and thiamine(b1) are important to the structural integrity of the fats found in the myelin. Alpa lipoic acid is an approved treatment for polyneuropathies in Germany. Supposebly that one of alpha lipoic acids positive actions is its ability to stimulate the regeneration of nerve fibers. Another nutient is acetyl l-carnitine.
I dont know about this stuff . I just copied some papers of my wifes.
Ron

Hi, Dean! Glad to hear from you although I wish the news was better. Been wondering what happened with you.

I have no advice regarding your treatments but will say I’ll keep ya in my prayers for the right treatment and outcome! Best wishes!

Carla

dean,

a worse ncv demands more ivig asap, like yesterday. take care. be well.

gene gbs 8-99
in numbers there is strength

Hi Dean,
You asked if there are better ivig’s than others. Well, as far as I understand, they all have the same basic composition, the immunities. Some sources say 20,000 different donors, others say 5-10,000. The other properties are how the ivig is cleansed, what detergents. Some ivig’s have sucrose, glucose or glycine. Please excuse the spellings. If you have diabetes, it is advised to stay away from the sugar based. Recently, a friend of mine on the site forwarded me some info from gammunex stating that they just completed some phase three trial and the results indicated that they feel their ivig is superior. The next day, my ig living magazine came and there was another company in the magazine kind of stating the same thing about their drug. I guess it in my opinion just boils down to who has the best advertising.

Some ivig does work better for one person than it might for the next person (from a reaction standpoint, unless you are using s/d a powder mixture which does have different IGg levels) The only way to tell which brand works best for you is by paying attention to your reactions and determining if they are bad, then maybe switch. Good luck and be sure to read old posts regarding slow flo rates, pre-meds and hydration to keep the reactions dow.
Dawn Kevies mom

Dean,

Rate of infusion can definetely cause problems. Usually they ramp me up slowly to make sure there aren’t any issues. After you have had it a few times you will know what works best for you. Also for me Gammaguard is the only brand that I don’t have issues with so my Dr. specifies that I must get that only. Everyone is different though and there are issues with IVIG supply all the time. Keep note of your rates and the brand used and any issues you have. When you see your Neuro. next be sure to tell him your experiences.

Jerimy

dean,

premed w 2 tylenol & 2 benedryl. infuse at 150 ml/hr max. some say 100 ml/hr.

take care, gene

Hey Dean. Was wondering how the dr visit went?
Ron

Hey, Dean! I’ve been wondering about you. I heard a little about you through a friend in your neck of the woods but I’d rather hear firsthand from you. Glad the IVIG seems to be helping! I’ll keep a positive thought for you and keep us posted on how you’re doing.