AnonymousNovember 28, 2006 at 8:32 am
Good Morning all! I haven’t been able to get on here in over a week so I thought I would pop in and give everyone an update. As much as I ‘ve read up on GBS/Miller Fisher, etc and as well as reading the boards, I still have questions and apologize for asking so many. 🙂
Corey finished up his IVIG treatments a week ago. He tolerated them quite well. And since his hospital stay the end of October I have seen some improvement in his condition. But I’m scared that he may not fully recover and be able to go back to work and I know that would crush him. He’s just not use to staying at home and sleeping all day.
His vision is somewhat better, but still has problems throughout the day. His pupils are still unequal, which highly concerned me from the beginning, but the dr. wasn’t really worried about them. They are alittle better, but still…. and he has weakness in his legs. And the headaches are still coming every day, and my goodness he’s so tired. Even if he gets up and does any type of activity he needs to sleep for a couple hours afterwards. I’ve read that some people continue to have problems years after the diagnoses. He goes back to the Neurologist today, so i’m keeping my fingers crossed.
Hope everyone enjoyed the holiday weekend!
AnonymousNovember 28, 2006 at 9:14 am
hi erin, don’t apologize for asking questions, we like to help whenever we can, thats what we’re here for. glad to hear corey is improving, we say gbs stands for getting better slowly, it will take time for him to get back to his new normal. most of us have a new normal after gbs, some good some ok, it is different with everyone. there is no time line on recovery. it will be tough for him in the beginning, but it does get better, support and positive vibes help tremendously. the fatigue level varies from person to person also, and from day to day. corey needs alot of rest, pt-but don’t overdo, and more rest. even the most simple thing pregbs is now ten times harder to do postgbs. the daily selfcare things will cause fatigue, it takes alot of energy to get out of bed, brush teeth, comb hair, shower, feed oneself and so on. it isn’t hard to a normal person, but it is really tiring to a gbs person, it takes alot to make the muscles do what you want them to do which in turn uses alot of energy. think of coreys’ energy level as sand in a hour glass timer, after every movement that sand is flowing through that timer, and that timer will have to be flipped over many times during just one task, just like his energy level it goes empty really fast. overdoing things in the beginning is really easy to do, don’t let corey overdo anything, rest is really important for nerve health. take care of yourself also, a healthy support team is really important. again don’t apologize for asking questions or just venting, we’re here for you and corey, like a cyberfamily.:) take care, and please give corey hugs for me, and keep us updated also.:)
AnonymousNovember 28, 2006 at 12:40 pm
I hope you aren’t waiting on possable availability of disability funds. This is where many miss the window of oppertunity. If he has social security benifits, now is the time to apply for it, if not done already. His present condition, with a statement from his doc this condition could presist longer then 12 months, should get him those benifits with little trouble. You wait, or the longer you wait, will only delay things more, and muddy things up to get it. Never, wait for something to happen. Always make decisions on how he is presently, and don’t let male ego get in the way. Nobody can predict the future. A simple no to SS if not needed in the future is all it takes to cancel it. Fatigue will be the longest lasting residual.
AnonymousNovember 28, 2006 at 1:52 pm
You may have read the article … [B]Residual Effects Following Guillain-Barré [/B]by [I]Gareth J. Parry Consultant Neurologist Auckland Hospital
Professor of Neurology University of Minnesota. [/I]
Just as a ‘refresh’ I have copied part of the article for you to read.
[QUOTE]A recent important paper from Dr. I.S.J. Merkies and colleagues in Holland (Neurology 1999,. 53:1648-1654) has established that residual effects from both GBS and CIDP are much more common than has been generally reported and that seemingly minor petrologic abnormalities may still result in annoying disabilities. The study used a validated index of fatigue severity to assess residual disability. It included 83 patients who had suffered from GBS an average of five years previously. About 80% of these patients experienced fatigue that was considered severe enough to interfere with their life despite that fact that the majority had normal strength or only minor weakness. They noted also that the fatigue did not seem to improve over time; the fatigue index score was the same in patients in whom many years had elapsed as it was in patients whose acute illness had occurred only 6-12 months previously. This paper provides sound scientific support for the validity of the observations of my patients who regularly complain of fatigue even when they have returned to all or most of their former activities and who are working full time at their former jobs. Although their strength may be normal when they are examined in the doctor’s office they are clearly unable to sustain the same level of physical activity that they had performed prior to their GBS.
[LEFT]The basis for both of these seemingly manor residual symptoms (fatigue and pain) is probably axonal degeneration. During the acute illness the predominant underlying pathology in most patients is segmental demyelination, a completely reversible phenomenon. However, some degree of axonal degeneration is almost invariable. As recovery occurs function is restored by a number of mechanisms. Axonal regeneration of motor axons probably plays very little role in restoration of function except in the more severe cases. Rather, surviving axons send out small branches called collateral sprouts that restore the nerve supply to those muscle fibers whose nerves have been damaged. This process of collateral sprouting is very effective at restoring strength to a muscle but the efficiency of the muscle suffers the muscle must work harder to achieve its goals. Thus, fatigue may result even when there appears to be full restoration of strength. On the sensory side, even a small number of damaged sensory axons may be sufficient to generate spontaneous discharges that are registered as pain or discomfort.[/LEFT]
AnonymousNovember 29, 2006 at 1:05 am
with regard to his vision, mine was the last thing to return to normal. My pupils were unequal for some time and i still occasionally notice that they look different which freaks me out a bit – so i start looking in all directions to make sure i have full movement lol.
I would say i am one of the lucky ones, i would say i am about 99% back to normal. I still get tired and it is only when i go to do certain tasks eg walking up stairs that i realise it takes a lot more effort than it used to. I am hoping to go back to work in the new year.
Like a lot of people have said, after GBS you tend to find a new kind of “normal”. Things may not be exactly how they were pre GBS, but you can still live a full and fulfilling life. In some ways i think i am a better person for what i went through.
AnonymousNovember 30, 2006 at 10:54 pm
My fiance Ben doesn’t enjoy being home either, but his fatigue and residuals are so unpredictable that this is how it has to be for now. He’ll be going on two years in February. It caught my attention when you mentioned that Corey has uneven pupils because Ben has a “droopy” left eye. He’ll be seeing a neuro eye doctor next week to make sure he doesn’t have something else wrong with him, but whatever it is is most likely related to the GBS.
Best wishes to you and Corey!
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