Remyelination what can you tell me?
AnonymousAugust 21, 2006 at 12:31 am
Peter is still fighting the uphill battle in his GBS and has 2 more plasma transfers left. Remyelination has not started. Can you tell me about this process? Is there medicine to speed up the process? As a patient could you tell when remyelination started? Each phase of this syndrome seems to bring more and more questions. Thank you for your compassionate heart in responding to questions on this board. Your help through sharing your experiences is greatly needed and appreciated. You are a comfort and a blessing to all of us who seek help and come here.
Thank you in advance for your replies,
AnonymousAugust 21, 2006 at 2:34 am
First things first. Which is let the treatment to halt progression of this disease get finished, get the body stabilized and then the determination that the treatments did do the job. This is what will happen in the next week or 2. The body is a bit busy at the moment to concentrate on healing, so to speak. Take stock in the fact that the mylin sheath is the fastest repairing part of the nervous system. There are no ‘speed up’ tricks to play with this disease. The thousands upon thousands that have come before him over the last 100 years with this disease would have found something by now if there was such a thing. Believe me, we all look anyway and all find the same answer. Nothing. It’s obvious that GBS hits the body pretty hard, and obviously weakens the body considerably. Guess what? So does the PP treatments. So, looking for immediate signs of improvement, often times don’t appear for awhile. Doesn’t mean healing hasn’t started, or isn’t going to start, it means the body needs to regroup some energy from the initial disease hit, along with the treatment hit, stabilize itself, then it can move on to healing itself. He has youth on his side which is always good. This is a time thing, and in time, you will see things come around. Forget the clock on this one. Hardest thing for people to come to grips with. I’ve seen a young teenager tottally paralized that walked out of the hospital in 3 weeks to the other end of the spectrum. You won’t know until you get there. Keep asking questions and I know this may seem strange, but at this first phase of the disease, is where you see the worst face of the disease. He’s already getting better, you just don’t know it yet. GBS gives everything up front, and once it’s halted, it’s all uphill.
AnonymousAugust 21, 2006 at 10:30 am
I have to agree with Marc and Ali. Only time and the bodies natural healing processes can affect remyelination. One thing Peter may try is to slightly increase the amount of fat in his diet during remyelination. Fat has the chemical building blocks for repairing damaged myelin cells.
AnonymousAugust 21, 2006 at 4:15 pm
One thing I would like to add is that we can understand the helplessness, scariness, and frustrations not knowing if the treatments are working to help stabilize. It is hard to tell from day to day if things are getting better, worse or staying the same. I had been hospitalized for a week AND completed my IVIG treatments before I had any paralysis at all and suddenly got worse. After completing PLEX however, the neurologists doing the daily checks were the ones to tell me that they thought I had stabilized because they can objectively see how my strength, paralysis, breathing, etc was from day to day being trained in that area. So listen to the doctors too as they were more often right than wrong even thought I couldnt tell a difference they could see what I couldn’t.
AnonymousAugust 21, 2006 at 10:31 pm
Nancy-Everyone else is correct be sure to concentrate on stopping the damage. One needs a lot of sleep, no stress, a positive outlook and positive attitudes around. If there is a negative person around kindly tell them they are not needed at this time! It will almost always get better it only takes time. Another sometimes overlooked path to healing is nutrition. Everyone here is probably tired of hearing this from me, but one thing you can do to repair myelin sheath damage is to eat right during healing-no caffeine, alcohol, msg, preservatives, fast food and any artificial things-these are all very detrimental to nerves. Find a high quality whole food multi vitamin and think about flax seed, bee pollen, wheat germ in a smoothie with fruits and veggies-you can easily get 15-20 servings a day using a vita mix or other high powered blender to make 2 drinks a day. I’m not a doctor or vita mix salesman but I know it made my life a lot better! Let me know if you would like more info.Good Luck!
AnonymousAugust 23, 2006 at 8:44 am
My 16 year old is recovering from GBS. He had a very atypical case and has had a very atypical recovery. In mid-June he was at his worst – hospitalized for six days with paralysis in his legs, face, and slight problems with his arms. Two rounds of IVIG and he came home walking with a walker.
It’s been a little over two months. He is training to return to cross country this fall and all things point to the fact that he will make it. His reflexes have returned and he has virtually no residuals.
He did not do anything special as far as diet – in fact fast food was kind of what kept him going as we were on the road 2-3 days a week for outpatient physical therapy. He left the hospital with no restrictions on activity or diet… just all as tolerated. Somehow he found the perfect balance in rest and pushing himself… as his recovery has been nearly flawless and much quicker than expected.
We definitely realize how lucky he is – I just wanted to share our story so people know that the quick recovery is a possibility.
AnonymousAugust 24, 2006 at 3:35 am
Good for you and your son!!!! It is very refreshing and enlightening to hear of such a successful recovery from this dreaded syndrome!! I too, have had a near complete recovery. I do, however still have weakness and fatigue issues (as MOST of us have), but very thankful to be at very near full recovery.
Thank you for your uplifting story, and soooooo happy for your son!!
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