How can lack of treatment hinder recovery?
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October 4, 2007 at 7:17 pm
My husband had a “flair up” of GBS September 2006. Although he was diagnosed with GBS, I think maybe he has CIDP because he has been having repeated attacks since 2001. This will be his fourth attack. His legs went paralyzed as usual. Now it’s been a year. Because he has been incarcerated since July 2006, he has not gotten either of the blood treatments available (forgot the terms for those treatments) nor has he gotten any physical therapy. Now it’s a year later and he still has no movement in his legs. He’s scheduled to get out of jail on October 14.
I’m wondering if I can get some opinions on how you think the lack of treatment can affect his recovery. Would the blood treatment do any good this late? I’m afraid he may never regain the use of his legs. And I’m also afraid about our living situation when he gets out, because he’s not on the lease, and the landlord may not agree to put him on the lease. I can’t afford to move. I have a 14 year old son at home and I’m not even making ends meet as it is. If he doesn’t live with me he’ll have no where to go and being in a wheelchair, it would be next to impossible for him to make enough money to afford rent by himself anywhere. And I’m not holding my breath that he’s going to get on disabilty anytime soon. Any input would be welcome.
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October 4, 2007 at 10:10 pm
annie,
when he gets an attack, he needs a ncv to compare to any older ones he had done, if worse it is a real attack & needs ivig or the blood treatment [pp]. not that it matters that much, but besides cidp there is recurring gbs as a possibility of what he has, assuming these are real attacks & not his residuals acting up. if i had to guess, i’d go for recurring gbs. take care. be well.
gene gbs 8-99
in numbers there is strength -
October 10, 2007 at 9:56 pm
What is nvc? I’m not familiar with a lot of the lingo. I’m afraid for my husbad and trying to familiarize myself with a lot. This forum and the people on it have helped me more than any website or book I could read. Unfortunately, I don’t have a home computer, so I touch base when I can. Thank you for being there. Hugs for you, too. Annie
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October 10, 2007 at 10:10 pm
annie,
NCV [nerve conduction velocity] – shows demyelination aka inflammation – measures velocity, intensity, and time of an electrical signal through the length of the selected nerve. it is used to diagnose peripheral nerve disorders. an electrical shock is applied to the nerves. the time it takes for the signal to travel between electrode sites, determines how fast the signal travels. In some nerve disorders, the speed of the signal is dramatically slower. in other words it is a good test when looking for a real gbs attack. take care. be well.
gene gbs 8-99
in numbers there is strength -
October 10, 2007 at 10:35 pm
Jacob’s had an NVC It came out ok He had another test for his muscles. His muscles aren’t responding to his brain’s command’s, because they are so atrophied. I don’t know what to think of that.
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October 11, 2007 at 9:09 am
Do you have any medical coverage or will hubby? If yes, then maybe a Dr can order IVIG to see if it will help at this stage.He also is going to need physical therapy to build himself back up and relearn how to use his body again. It will be a long, hard road back from where he is right now, but everything is possible. Also if your landlord says he can’t live there, you will need to see an attorney to see if he can live with you. Those are my only suggestions.
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October 11, 2007 at 9:47 am
annie,
if the ncv is accurate, then his nerves are ok hence eliminating gbs. if the emg to test his muscles is accurate, it is good proof it is not his nerves & is, in fact, his muscles. as brandy says, he’ll need to rebuild those muscles. take care. be well.
gene gbs 8-99
in numbers there is strength -
October 11, 2007 at 2:46 pm
Jacob didn’t get a nerve conducter test until about 6 months after his legs became paralyzed( because of how complacent the medical staff is in correctional facilities) The doctor said there may have been something wrong with his nerves but they’ve since healed. Jacob will see a doctor shortly after he gets out, even if that means going to the emergance room. He will apply for medicaid as well and that should cover the medical bill 30 days retroactively. Thanks for the input.
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