May 1st is GBS awareness day

[LiberalLoner]

In light of that, here is a link about the disease:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001704/

"Guillain-Barre syndrome is a serious disorder that occurs when the body's defense (immune) system mistakenly attacks part of the nervous system. This leads to nerve inflammation that causes muscle weakness." (From the pubmed link.)


(Personal disclosure, I became aware of this disease when I came down with it 7 weeks ago.)

[samplegirl]

1. I am a GBS Survivor

I had this disease at age 19 and I am one of the lucky people who made a full recovery.
Left with days of fatigue and joint problems.........but I'm alive.

[uppityperson]

2. I've a friend who has it also. Hoping you are doing ok.

If you are typing, you're doing better than he was at 7 wks. 2 yrs out and still isn't mobile, got it after a gastrointestinal thing. Thanks for posting this. GBS is a weird, very serious and frightening thing. Best wishes to you.

[samplegirl]

3. Thanks Uppity .........I am now 50 so it has been a long

time for me............but wow you never forget if you can live through it. Mine was serious and I was on a Ventilator and
spent weeks in a rehab. learning to use everything all over again.

[LiberalLoner]

5. Wow. I was really lucky, paralysis only made it up to my waist, so I didn't

have a ventilator but had to have a foley and I was so incredibly weak and dead-tired. I just couldn't stay away for the life of me. my husband said I looked like I was close to death there in the ICU. It's a pretty serious illness.

I have made a good recovery as far as being able to walk and type go. I do find that if I try to have a normal day of activity or if i try to exercise the way I did before the illness, I have a relapse. So I guess I will have to just play it by ear as I go along and see if I get all the way better or not. The lack of energy is what concerns me most at this point because I'm worried it won't ever get any better. It really is a strange disease.

I'm glad you are better now - I'm sorry that some residual problems remained though :( I"m glad you survived. This thing has a 4% death rate even with the best of care.

[samplegirl]

4. Ah.......I feel for this person

Thats how it was with me............had the flu first and next thing I knew...I was on my death bed.

[uppityperson]

6. 1 day he had the runs, next day difficulty breathing, hours later on a respirator

Very frightening for him, such an odd syndrome, not being able to predict who and how bad it is. It will be good to figure out why this happens, or to whom, etc. Wondering if there will, eventually, be some genetic marker for being suspectible, or if it will just be random.

Glad you recovered, keep up the good work.

[LiberalLoner]

7. Exactly! I returned from a trip to New Orleans with my husband (anniversary) and I had the

stomach flu that I'd picked up during that trip. Then I got better from the flu and all of a sudden my feet and hands were numb and my lower back hurt worse than when I'd been passing kidney stones. I thought I'd pinched a nerve or something.

Then the next day the numbness had spread and I could no longer stand up from a sitting position by myself or walk normally, and I felt just so weak overall, in my arms, I could hardly sit up. I just felt so sick and so exhausted.

When I reached that point my husband took me into the ER and after a thorough exam where the doctor noted I had no reflexes and poked my skin hard enough with a needle to leave me bleeding (I felt nothing) I was in an ambulance on the way to Walter Reed Army Medical Center.

I know I have been extremely fortunate to have survived, and extremely fortunate I wasn't ever on a ventilator. I do struggle with feeling a bit down and frustrated wondering if I'm ever going to regain normal energy levels and the ability to exercise like I did before I was sick. It's just not knowing what the future holds for me that is a little hard but I remind myself it could have been far worse. And I was lucky I was one of the Americans with access to health care. Otherwise there is no doubt in my mind I would be dead right now.