Caught in Time…. Thank God!
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November 24, 2006 at 6:09 pm
My little brother has been incarcerated since July ’06, not a bad or violent guy, just can’t seem to stay on the ‘right side of the law’ so to speak..lol. Anyways, he caught pneumonia in jail and was quickly put on meds for that. While appearing to recover from the illness, he also started feeling incredibly weak and shakey. Within a week he was immobilized and getting around the institution in a wheelchair. Dr.’s only visit once a week, and guards were giving him Tylenol for the pain he had in his lower legs. No one really took him seriously, as you can imagine in a place like that. His phone calls to me became more frequent and although he tried to laugh off the symptoms to me, I could tell he was worried… and this in turn worried me. After I made a threatening call to the Corrections Supervisor they finally took him to the hospital. Yes, he was diagnosed with GBS and I was shocked when I finally got to see him. His arms and legs were paralyzed and he was extremely weak. He was give a Temporary Leave, as they cannot guard him indefinitely at the hospital (thank God), so we can visit him alot now. They started him on the Plasma right away and within a week he is already walking, alebit slowly. He has some use of his hands and arms, but again, very shakey. The Dr.’s say he has a less severe from of it and he should recover fully with therapy, but have no idea how long it will take. One interesting note: The nurse in his ward has never seen a case of GBS in her 30 yrs. of working there and this week alone, there were 2 – my brother and another man down the hall!!! My question is because it is a less severe form, what is his recovery prognosis and what are the chances of a relapse later on? I had never heard of this disease until last week and now I am knee deep in research. Apparently they are doing some sort of shock therapy next week. I’m glad it was caught early and I shudder to think of the outcome if it had remained ignored in his then current living environment.
Thanks for any info you can give….
Wendy
(Big Sister) -
November 24, 2006 at 6:19 pm
HI Wendy
welcome! I am glad to hear your brother is on the road to recovery. I too had a less severe case that started in July. I didnt receive treatment so your brother is fortunate 🙂 I was told by my drs that it could be 6 months or it could be a couple of years for recovery. Even if everything is healthy and recovering, they cant predict how long it will take to be back to “normal”. And I am not entirely sure if hte severity of the case dictates the final outcome. I am sure there are others who can touch on that.
HUGS and Prayers!
Lori -
November 25, 2006 at 5:46 pm
Best wishes to your family, Wendy. I hope everything works out for the best for your brother, and I hope he can be with his family for a while so he can recover. Prison isn’t a good place for a GBSer.
Love,
Shannon
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November 25, 2006 at 5:57 pm
The severity of GBS does not dictate the outcome………
I had a severe case in Nov 2002. Paralysed completely from the neck down, on a vent and in ICU for 79 days. I was on the road to a fairly complete recovery by June 2004. In July 2004 I had a ‘mild’ case and am still suffering from the residuals, the most prominent, pain. I am able to do anything I want to within reason and time.
Now, relapse can occur in 3-5% of those that has already suffered from the syndrome. It is a small chance but you NOT should dwell over it. This will only hender the recovery and increase the likelyhood.
I wish your brother the best.
Angela
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November 25, 2006 at 8:58 pm
Whoa there – shock therapy????? This is not something that is usually associated with GBs treatment. Tell us more.
Suzanne
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November 26, 2006 at 2:05 am
Perhaps you mean a Nerve Conduction test (NCV)?
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November 29, 2006 at 12:05 pm
Now that I’ve read more on GBS I’m sure that is what they meant, but for some reason used that term….lol. I will be seeing him today so I will find out how it went….
Thanks for all the info and well wishes, looks like he’ll either be in hospital still or at least at the rehab centre over the Christmas season. The disease definitely sucks, but at least we’ll get to spend the holidays with him instead of visiting at the Correctional Facility. Trying to see the silver lining I guess.
Thanks again,
Wendy
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December 6, 2006 at 4:42 pm
Just an update…. my brother was getting better and finished the round of plasma. After a week he started regressing and getting worse again. They are going to try the plasma one more time and see what happens, but they are wondering if maybe they’ve possibly misdiagnosed him – but haven’t mentioned what else it could possibly be. Is there anything else that is commonly mistaken for GBS, and if not then what other options does he have if he doesn’t respond to this second round of plasma?
Wendy
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December 6, 2006 at 6:09 pm
They really need to get him started on IVIG if PP isn’t working.
Jerimy
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December 6, 2006 at 6:22 pm
ditto jerimy. plasma works 70% of the time. ivig is next. gene
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December 6, 2006 at 9:57 pm
So just after my last post, my bro called from the hospital to let me know that he saw the doc today and they have given him a new diagnosis. A variant of GBS called AMAN. I tried looking it up on the net and I can’t find anything on it at all except that it’s the more severe of the variants and in most cases…. fatal. If anyone has any info, please post as I need to call our parents and tell them something soon. Thanks.
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December 6, 2006 at 10:23 pm
Wendy,
I’m out of whatever literature I would have on AMAN, but if you contact the GBS Foundation at 610-667-0131, they might have something they can send you. I need to re-order my supplies! Thanks for the reminder!
Shannon
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