hello world! my story of getting GBS and getting well
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May 23, 2008 at 3:33 am
Hello all.
First of all: this forum was so great to find. I couldnt post in my greatest despair because i was still waiting for account approval – but the day i felt worst i read through a lot of the posted info here. The joke threads were a lifesaver!
So, the introduction and the tale of my meeting with GBS.
My name is Andreas, i’m a 31 yr old norwegian, and I’m being sent home from hospital today only 12 days after noticing the first tingling in my hands, and after 9 days on the hospital. Things have been going very fast!
GSB started attacking me during a weekend vacation (with the best weather yet this year).
Day one – sunday morning – i noticed tingling in my hands and ignored it. Thought it might be from sunburn and made sure to apply extra sunscreen on the arms.
Day two i woke up with cramps in my lower legs. Strange, i didnt do any proper hiking this year – just walks with the baby stroller. Mysterious. I tried to walk it off. Didnt work. Got home from vacation. Wife checked my whole body for ticks (carriers of borelia virus) but found nothing.
Day three i felt about the same, and went to work. I checked some web sites and got a bit of panicky when i realized tingling hands could have a neural (spinal) cause and not just be circulation problems, allergical reaction or such. In the evening i fell down the stairs and felt right stupid about it.
Day four – THE IMPORTANT DAY – i decided to go to the doctor. Luckily i managed to get an appointment before lunch the same day. On the way (7 min walk) i managed to walk off the pavement twice because some of my legs were wobbly.
The doc was a very nice guy but had no clue as to what could be wrong. He decided to do a bit of research and see me again the next week. However he established that
*this was neural (eliminated other possibilities), and i’d most likely end up with a neurologist.
*this could be serious, and if there was any change in symptoms i should get in touch immediately!The same afternoon my mouth started feeling numb. I fetched my saxophone and found out that my facial muscles had become weaker. I decided to call the doc first thing in the morning. Few hours later i discovered the weakness wasnt just the mouth but in the whole right side of my face. At bedtime i noticed i couldnt close (ie squint with) my right eye and went to the medical ward instead of to bed.
Less that an hour later i was in a taxi on the way to the hospital.
Day five was full of action.
1AM: arrival,
1.30 AM: first checkup by neurologist, blood samples etc.
3.30 AM second check by neurologist, i get a room, they are waiting a blood samples analysis before proceeding.
7 AM: spinal fluid sample.
8 AM: new neurologist comes to check, says i may have something something syndrome (GBS).
9 AM: neurology professor comes along, can i be exhibited on in his class tomorrow? he takes the time to explain a bit more about my prognosis and treatment.
11 AM: installing “neck plumbing” (sorry for not knowing the word – tubes going into the big vein below my neck)
1 PM: xray checking the plumbing
4 PM: first plasma treatment beginsDays 5-12 have been slower paced. I got worse and then i started getting better on day 10. I got 4 more plasma treatments, and i had to change from neck plumbing to chest plumbing because there was a bend on the former (trying to force blood the wrong way in the veins is painful and gives you big yellow bruises). Got checked by some students and displayed in the plenary lecture, but still 3 more docs have tried to use me as case study (“sorry, your colleague used me up the first day, now everyone knows what i have”). I got checked with EMG (electric stimulation of muscles, measuring of time and signal deformation) and i’ve given… hmm… about 50 (?) blood samples.
At the same time my family, friends and church started a big prayer action for me – even getting 5000 kenyans on a ‘healing meeting’ to pray specifically for my recovery: literaly a global prayer action spanning 3 continents. Believe in it if you will – all i can say is that i am recovering very fast!
Yesterday, day 12 and the 8th day in hospital, the doc told me they wanted to keep me one more night just for observation but there was no point in me staying here any longer. My smile is returning at millimeters per day and the tingling is almost gone – i walk like a 90 year old, but much better every day.
Day 13: Today i go home. I’m allowed to go back to work fulltime any time i want (as researcher, physically not demanding), i just have to avoid exerting myself (pulse below 120) until I have recovered fully. No phyical therapy needed, no acupuncture or speech therapist, nothing. Just a bit of time.
Earlier this week, the doc estimated i’d get worse for 1-2 more weeks before starting recovery, and that i could safely cancel my july vacation plans because i’d still be in hospital then. 3 days later he says i’m ready to go home.
He also said I was very lucky to get facial paralysis so soon! Without that i’d never get myself to hospital (and treatment) so fast. He says there isnt such a thing as a ‘weak attack’ with autoimmune deseases – if it triggers at all, it cascades. So he strongly disagrees i had a ‘weak attack of GBS’ and says it’s only a matter of getting the treatment early enough. The ECGs (heart graphs) show that my heart and autonomous system was indeed weakened, but the treatment had very good effect.
Morale of my story: get treated ASAP. Dont leave without a diagnosis. If the diagnosis is GBS, get treatment the same day!
I know I skipped the line several places during the first days – and as a result they managed to stop it before real damage was done. My second treatment was delayed though because another patient had to be revived (heart starting equipment and the full works) and they just abandoned me in the hallway: even GBS isnt _that_ urgent.
ok, thats it from me. I’ll keep browsing there forums at least until i got a full recovery. But fortunately there wont be any more action packed drama from my side, just slouching on the sofa all day until that cures me 🙂
take care all, and Get Better Soon to all that suffer.
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May 23, 2008 at 6:13 am
[QUOTE]He also said I was very lucky to get facial paralysis so soon! Without that i’d never get myself to hospital (and treatment) so fast. He says there isnt such a thing as a ‘weak attack’ with autoimmune deseases – if it triggers at all, it cascades. So he strongly disagrees i had a ‘weak attack of GBS’ and says it’s only a matter of getting the treatment early enough.[/QUOTE]
My palate was paralysed within hours of my first symtoms (also pins and needles in my hands) and it was the slurred speech that sent me straight to hospital knowing that something was serioulsy wrong. I was diagnosed within 24 hours however that didnt stop me progressing to full paralysis. before they could start IVIG i went into respiratory arrest and was put on a ventilator. So in my case a quick diagnosis and treatment didnt stop the progression however it did allow the recovery process to start sooner.
You are right re the moral of the story though – if you think something is wrong, dont wait for it to get better by itself, seek treatment straight away and dont let them tell you there’s nothing wrong if you KNOW things arent right.
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May 23, 2008 at 9:06 am
Andreas,
It is good that you are on the road to recovery so fast. It’s also amazing how well you could remember the events that happened to you and document them. So many of us seem to have short term memory problems.
Keep getting well.Shirley
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May 23, 2008 at 10:12 am
Great to hear you are doing so well. I did not get treatment as quickly as you although I had sought medical assistance early on. I was totally paralyzed and on life support but still managed to be home within four months. I had tonnes of people praying for me as well and I do believe in the power this gives us. As you say, believe what you will but I do believe there is a spiritual presence there if we are open to it. If nothing else, knowing there are huge numbers of people keeping you in their thoughts can be a motivating factor for healing, as well.
I am a firm believer in the power of positive thinking. I believe it got me through some of the rough patches as I healed. I use it today with medical issues and it is my coping strategy for keeping my spirits up when I feel like things are not going well medically for me.
These forums also help me deal with the issues that so many of us face, I believe, life long. This illness is now part of who we are and impacts us regardless of how long or short our recovery was/is. It helps knowing others are experiencing similar issues, that others are thinking of us in our times of need. I am truly blessed in so many ways and look at GBS as a blessing in disguise, even on the dark days when I wish it did not exist. Good needs to come from this and so I use it to help me as I move through life. I hope the same is true for each and everyone of you. I do give in to self pity some days, but I am finding it easy to go back to the positive thinking when I look at the blessing it has given me.
May you all find the blessing in this terrible syndrome. -
May 24, 2008 at 7:32 pm
Andreas, its good that you are recovering well and that too in such short time. You are very lucky. U’ll be up and running very soon.
I agree with Janet. Positive thinking was one thing that kept me going when i battling GBS. At no point did i thought that i wont recover from it. Just keep working, results will follow. -
May 25, 2008 at 4:54 am
small update:
been home for two nights now. There has been steady improvement (but still weeks to go). Strangely enough, the first morning out of hospital I felt more tired and sick than the days before. But i just now realised why:
As long as i was in hospital i compared my condition to how i was the first couple of days there – but after coming home i compared everything to ‘normal’ healthy life.
ie. yesterday i focused on all the things i have problems with instead of on the improvement. Stupid of me, and i spent a lot of the day on bed or napping on the sofa instead of doing better things (like playing with my kids).
Today i feel a bit better than yesterday, and that’s all it takes to have a great day so far. Positive thinking indeed!
andreas:-)
going to recover 100%, just give me timePS: i wake up feeling my back is ‘twisted’. Nothing directly to do with gbs, but i think that when i try to turn in my sleep my legs are too ‘heavy’ to follow and i end up in a cramped position. Anyone got an idea what to do? Is my matress too soft maybe? In the hospital bed i had no problems but there i slept with a slightly elevated upper part so that i wouldnt turn around (and fall out).
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May 25, 2008 at 9:47 am
Andreas
Well done on your positive attitude!
The reason for having a better day is probably because of the napping you did, it definitely is not silly, and pushing yourself, regardless of how good your attitude is will not imporve things. Dont beat yourself up over getting down because you are having a bad day, it is a normal reaction and one we, in effect, go through in order to get through our ‘grieving’. It gets so frustrating when one cant yet be how we used to be before, and sometimes we want so much to spend time with our children and families more, the reaction to that is often guilt, unfortunately. The inclination is for us to look at ourselves and see a normal looking person (and thats what everyody else sees), but its so important to realize that your myelin/nerves were attacked and have been damaged and they are trying the heal, your body is unable to function correctly at the moment because it has in enssence, lost a part of itself.
Keep up the good attitude, have plenty of rest.
I wonder if puting a pillow(s) under your knees when you sleep will give an easier time turning? But, thinking about it, how would you turn the other way once you have turned once …..:confused:
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May 25, 2008 at 6:53 pm
Try this. Put a towel or folded sheet (sheet is more comfortable) under your hips and legs when you lay down. Pull the ends up to where you can reach them with your hands. When you roll over, pull the sheet around your legs and use the sheet to bring your legs with you. I am not sure how much strength you have but I have used this and it works. If you are weak, you may want ot ask someone to help you and again you can use the same principle only the other person pulls on the sheet.
It sure beats waking up twisted. And don’t be afraid to spend the day on the couch napping. I know you feel the need to play with the kids, etc, but rest is what it is going to take for the nerves to heal and the better care you take of your self now, the easier it will be in time to resume sense of a normal life. Well, as I always told people, “My new normal”, which has now begun “My normal!”
Take good care.
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May 26, 2008 at 8:09 am
Andreas.
I was home five months before I could go one day without taking a nap or laying down just to rest. Your myelin sheath needs rest to heal. Get as much rest as you can right now. You made a fast recovery but it takes longer for those nerves on the inside to heal. I also had the same problems turning in bed that you do. I had to have help to turn the first couple of weeks home. The legs were too “heavy” and the hips were of no help at all. Gradually as I got stronger I was able to pull myself over using the headboard and the side of the matress. I am able turn with no help now but my legs get tight and draw up with the pain going up into my lower back. In time I have hopes this will get better also.
Travel slowly with patience.
Prayers for you and your family
Shirley
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