Two Years Later ...

Two Years Later...


I post this, as promised to several who had contacted me via this blog, exactly two years away from diagnosis.

How do I feel now? How is my health now?
 
Well, I'm superb! But am I like before two years ago? I am worse in some aspects, better at others.

I still experience the following symptoms and phenomena:

  • Calf Cramps! Nasty ones.
  • Hand cramps!
  • More Leg Cramps!
  • Strange electrical pain at certain accurate scheduled times of the day - usually evenings
  • Some short term memory loss / occasional concentration issues (caused by pain filtering mechanisms in my brain)
  • Arm/Hand/Finger tremors
  • The feeling 'hollow legs', as if they are empty inside. Very iffy feeling. This feeling is now more focused towards the calf muscles and feet.

So let me explain, because, let's face it, the above list is confusing for anyone who have not experienced GBS, to comprehend. It also seems contradictory to my statement that 'I feel superb!'.

You see, GBS has changed a lot of stuff in me as you've probably read in my main blog. My progress to better muscle strength is still continuing up to this date. The pattern remained...I get severe pain...then slowly progress to better movement. As time goes by, progress-events become fewer and further apart. But some are barely noticeable until you come to do some fine task, such as, apply solder to an electronic component on an electronic board.

My O.T and Physio sessions also stopped. It's a matter of nature taking its slow course now. The cramps have also decreased in strength and are much more controllable, in the sense that I can halt a cramp mid-way whilst it's happening. Fascinating, although never welcomed.

In short, I have taken my life back. And yes, I can describe myself as 95% healed. My stamina is almost back, my immediate strength is back, but GBS is strange in a way, because my exercise recovery time is not quite back. If before, I used to require 1 day of rest after vigorous exercise, I still need a whole week, even two, now. But looking at it positively (as should everyone look at things no?) one week is great compared to 1 month that I used to require only some few months ago.

It's only very recently that pain in the plantar-area of my foot has drastically reduced too. The pain was CONSTANT for more than 18 months. Yet, now, I walk flawlessly and mostly pain-free. Unless I get tired that is, in which latter case, I start to limp a bit and get pain similar to plantar-fasciitis. I still wear running shoes everywhere I go. Elegant, hard soled shoes tire me 10X as fast as running shoes - probably due to the crappy foot support they give in preference to the more 'elegant style'.

As explained in my main blog about my GBS experience, I refused, even up to now, to take any medicinal drugs to ease any GBS related pain. I am far too scared of the side-effects of amitriptyline or morphine (or the likes) and I trained myself hard to mentally suppress any pain I might have from time to time (especially evenings at very specific accurate times, such as 8:30PM, 9:10PM, 10:25PM). This pain-supression-via-brain thing however, does take it's toll on me at times, with me losing a bit of short-term memory tasks and patience in general. The time-based accuracy of painful events is one mystery I have not solved yet. Why does it happen at so accurate times? As time went by, I could actually tell the time, based on my pain/cramp events and I was always spot-on +/- 5 mins. Amazing!

My hand atrophy? It's still there. But I see a bulge growing very slowly in the atrophied areas - maybe my hand's physical appearance will return to 100% normal? Who knows? We shall see. The important thing is that I use them normally for just about any task.

The hand tremors? Unfortunately yes - they are there and stronger than ever. Sometimes stuff falls out of my hands. This is the only problem that irks me the most. Sometimes I have trouble doing tiny tiny things, such as soldering or handling tiny wires. Ah well.....I haven't seen this improving. Actually, sometimes, my hand/finger tremors are so bad, I have to rest and re-concentrate at the task at hand with two hands rather than the usual normal one hand. Ah well....compensating. This tremor thing does have a serious toll on my patience at times...but wtf...

I also noticed that coffee (especially espresso) makes my hand tremors way worse! The affect is instant and fascinates me, usually lasting around 3-4 hours. Hunger also has the same affect, as has over-use of my finger/hand muscles.

In what ways am I stronger? Well, if you go through something similar and think life through, and don't die in the process, rest assured you'll be stronger in many many ways. Enough said on this one. ;)

But as I said, I'm being a bit (very) picky in this post of mine - all in all, I really am superb. I can easily hide that I have had GBS to most and have resumed my daily work, duties and activities and even increased hobbies now that I've improved my work/life balance which I did not have before GBS. I have met amazing people since my diagnosis, some of whom fared way worse than I am now, with some having had their diagnosis  around 15 years ago! I was lucky enough to receive scientific intervention right on time! Others may have not, or where in a place and/or time where there were not any  iv-immunoglobulins invented or made available.

I also take this opportunity to thank you all, readers of my story, for the fabulous messages and email and comments of support on this blog. I am very happy and surprised to learn that this blog about my GBS experience was actually read by thousands (despite the length!) around the world. I salute you all.

Stay strong, stay positive - GBS, like my main blog, is not a short story, but a life changing one. 
But an end, it does have, and I think, I think..... I think I can really see it now.... two years on....

20 comments:

  1. I just learned that someone I knew had GBS and I wanted to know more, thank you for sharing your story, it gives inspiration and peace to people who have the syndrome or know someone with the syndrome, life anyways is not easy and all we need is inspiration, and will. I Hope my friend is able to reclaim his life just like you.

    Best always
    Ragib

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  2. It is very encouraging for me to read this very detailed and excellently narrated blog. I am 72 years old and live in Bangalore, India.

    I was "struck" by GBS very suddenly. One night I walked as usual to my bed ti sleep. Next morning I was practically paralysed below my neck. I was rushed to hospital for emergency attention. I was diagnosed with GBS and taken to ICU, where after some tests the process of plasma pheresis was started. Over a period of a week, 5 sessions of plasma exchange were done. After four more days I was discharged from the hospital and came home on a stretcher. Over the next six weeks with excellent nursing and daily sessions of physiotherapy, I was able to move around with the help of a walker. In the next three months I was walking about almost normally. However, I had no stamina. I would get tired easily.

    It is now a little over six months after my "attack". I still have numbness in my hands and feet. My knees become stiff. I continue to take Pergablin Tablets 75 mg - one tablet twice a day. No other medication. My neurologist says this situation is not uncommon and I should get better with time. The three doctors whom I have consulted all say that nerve endings are in the finger tips and toe tips and hence they take the longest to recover.

    Your blog is very very encouraging for me. I am sure I would gain much better strength and recover sensations in hands and feet fast. I am grateful to all who have helped me to reach this stage.

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  3. Thank you for your comments (a thank you also goes to all of those who privately corresponded with me). I am very happy many are finding this blog and its followup useful and encouraging.

    Thank you Kollengode Narayanan for sharing your story with us. At 72 years old, I am impressed by your recovery!!! Although the general pattern followed by GBS is similar, this still goes to show how GBS affects us all in a different way.

    As for others reading this, stay strong, stay safe, persist to recovery no matter what! Good luck to you all, whether you are patients yourselves, or supporting anyone you care about...

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  4. My two year anniversary was January 28th, 2014. Six days to get a diagnosis, five days of IGIV. Hospitalized 4 1/2 months, then CCAC home care and still have lingering problems. The specialist said that it will take me until 2015 (3 years from attack) to become as recovered as I will ever be.

    I agree that there can be positives come of a bout of GBS, at least there was for me. I've certainly come to value being alive more and have much more respect for how awesome my body is. It suffered such trauma but came back, at least quite a bit. Also, family and friends feel even more important and special to me than they did before GBS. Their care, support and encouragement was and continues to be, amazing.

    However, I do have a different perspective on one thing you said on this blog - if I had a choice, I would not do it again. It was horrible, with pretty much total paralysis and excruciating pain. But it is what it is and if we're to have a good rest of our lives, it's best to keep moving forward and to try not to dwell on it. Sounds like you are doing a very good job of that. :)

    I've not increased my hobbies, due to lingering hand, eye, brain and energy issues. I'm not back to work yet. If you ever figure out how to get past the those mental brick walls and the fatigue, I hope you'll add it to your blog.

    Re the progress plateaus, I have noticed too, that they last much longer than before. My plateaus can last for months then suddenly, one day, something is improved. I just try to do as many normal things as normally as I can. Seems to work pretty well for the most part. Still things I need help with, though.

    I share your experience with the tremors and cramping. Have you tried gentle massage, or massage therapy? MT helped with my worst pain. Very gentle massage helped turn my 'claw' back into a hand, relaxed the muscles. Now, I only get occasional spasms. Re the steel muscles (that's how they feel to me), I stretch them. Helps temporarily.

    You have made terrific progress! I'm curious to know if you have started driving again? I'm very nervous about that.

    Hope you will continue to write about your journey.

    Shirley

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  5. I had GBS in july 2009, so its been 5 years now. While i can do most of the things i used to do before, I still get the hand tremors occasionally and sometimes pain in my legs and arms, little bit dizzy and the feeling i cannot breath normally etc... But i notice all the bad feelings i get happens after i overdue things. So bottom line is i cannot exercise too much, cannot skip meals, cannot stress and i need to sleep at least 7 hours. Also caffeine makes it worst. Visual over stimulation is also a big no for me.

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  6. Thanks for your post. My husband was diagnosed 2 months ago and is experiencing the intense pain that you write about. Which you had for 4 months. Hopefully his pain will end by then as well. Take care.

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  7. Thank you for sharing your story. It has helped me understand what I am experiencing is to be expected. Your information has proven invaluable to me. Warm Regards, Gail

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  8. Hallo Trevor, thank you for sharing your GBS story. My 16 year old son was struck by GBS in July 2014, also spend 3 weeks in hospital. He is back in school since middle October, with no obvious physical deficits, or none that he complains about. However, he gets tired so easily, and so severely, even now when he have to study and write exams. Your story has made me understand a little more about the struggles, even if it isn't obvious to us.

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  9. Thank you Trevor for your blog. A friend's daughter in her teens was struck by this disease recently, and I was trying to learn more about the disease ... the experience of it, not medical jargon. Your description of what you have experienced and are experiencing ...has given my mind something to wrap itself around. So wonderful of you to take the time out of your life to compile this. Thank you, from King of Prussia area, Pennsylvania, USA.

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  10. Hi Trevor, I think it's great that you shared your experience so well. I had GBS when I was 21, and was completely paralysed for so long I ending up writing a whole book about it. I am glad you recovered so well.

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  11. You are such an inspiration for me. I want you to know I started my blog the night I found yours. It makes me feel a little better to get it out there...Facebook was just too much as I had so many responses I was overwhelmed. Everyone has different symptoms and everyone had different outcomes...but yours seems to be very similar to mine and your list of things you feel are the same as mine. I don't really know where I'm going with this...I just wanted to thank you for getting me started without even realizing you have done something good for me.

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    1. You are most welcome Jennifer. Best of luck with your recovery! Hang tight in there. Thank you so much for your comments....words cannot sufficiently express my gratitude at even taking the time to read my humble story of this adventure and test of life. I am now 3.5 years away from diagnosis. Recently my cramps have subsided by quite a bit and it is only now that my hand and finger tremors are improving.....I hope to post an update as time goes by and I keep noticing improvements....subtle as sometimes these may be...

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    2. You are most welcome Jennifer. Best of luck with your recovery! Hang tight in there. Thank you so much for your comments....words cannot sufficiently express my gratitude at even taking the time to read my humble story of this adventure and test of life. I am now 3.5 years away from diagnosis. Recently my cramps have subsided by quite a bit and it is only now that my hand and finger tremors are improving.....I hope to post an update as time goes by and I keep noticing improvements....subtle as sometimes these may be...

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  12. Hi Trevor...you are a great inspiration for me as a very recent victim of GBS. Just celebrated a month. Trying to walk few meters of course with the nasty cramp..typing this comment with just 2 fingers. Your experience just reflects how I feel now and how I would have written my blog. It was hard for me to explain my friends and relatives on how I feel. Its lot for support from my wife, family and friends..recovery in on way... Thanks a lot for sharing your experience and hope I will return to at least 95% recovery... Thank you

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    1. Thank you for writing Vimal, despite the obvious physical difficulty. That's the spirit! Hang in there my friend! Keep the fight on and don't give up! It's hard and frustrating, but there is hope.

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  13. My sister in law was just diagnosed with this 2 months ago and has not left the hospital. IVIG treatments, tons of PT and OT and continues to decline. Were there any differential diagnoses that they considered? I would like for her to go to Mayo for a second work up. She is declining fast. She works in a hospital laboratory (high stress position) and wondering if exposure to some kind of virus or bacteria could be causing her symptoms. If you had any other "possible" diagnoses, I would like to know what else was considered. I am scared to death for her. This came on so suddenly and I am afraid they might have misdiagnosed her, as she is not responding to treatment at all. Glad you shared your story.

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  14. Trevor, thank you so much for sharing. This is can be very scary when you have multiple issues still hanging on after you begin your recovery. My doctors think I got GBS from a blood disease call CLL. They believe it trigger the GBS and it took nearly 5 to 6 week before I could not stand, walk, roll over or use my hands much, for 3 months. Some say it is/was SIDP, but my doctors don't beleive in SIDP. Anyway, I am 2 years in recovery having been stricken in August of 2014. I can play golf, but my balance is terrible, and get tired fast. I am 64 years old - so maybe that has something to do with it also. My biggest problems are cramping in my calf muscles. OMG if I try to stretch in bed at night - yikes. Then my legs / calfs are very painful the next day. My hands and feet tingle. No real numbness, just tingling like they are falling asleep. Sometimes they are really cold and other times they burn. Strength is good in the hands and arms. I am about 75% in the legs and feet. My doctors have also said that it will take 3 years before you really know the extent of the nerve damage and recovery. I would love to help others in any way I can.
    I am especially greatful to you and those that have shared their own experiences. It really does help with the stress of not knowing what the heck is still going on with me. I can fool most of the people most of the time - but on my own it is still hard to manage sometimes. Thanks again.
    Scott L

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  15. Hi trevor
    my 19 years old daughter got gbs 3 years ago and although recovered mostly she has had 3 operations on her ankle to free tendons. Sge is still in a wheelchair and nay need another operation. Very hard for her and us to stay positive. 3 months wait now to see surgeon then god knows how long for operation to take place. Hopefully all will be healed in the end and i will show her your story to help her. Its so fn frustrating. Good luck in the future. David and rebecca

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  16. Hello trevor,i have followed your post for about 3 months since I started recovering after being hit in may 2016, I don't count that month because I was. Still active throughout until mid June when my legs gave in.at this point, I can wobble walk around the house and just about 2km away (nota good sight)worse than a robot lol.so sad I had to spend the xmas and new year holidays like this but then I'm hoping on getting stronger before law school in June. Funny enough, I didn't receive any treatment or do physio since we couldn't afford it, it just started reversing on its own and yes, I learnt how to do some simple at home exercises, stretches on my own.my left foot drop has corrected to an extent, I can atleast stand to shower. I can do quite more than I couldn't a month ago and I'm glad.im also writing a journal of my journey through. I'm Nigerian, 23 years old, would be 24 in April and I'm hoping I'm strong enough to have the best of it. I'll like to communicate with you more often sire, your blog has been quite inspiring. Now I just need to be stronger. I entered the 8th month today.i can't wait. I really long to get a reply from you. Thanks and all the best.

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  17. I am writing on behalf on my mum who has Guillain-Barre syndrome since May 23rd 2016, she is still in the hospital completely paralysed from head to toes, she has a respirator since then and last month she started moving her head very little, today she moved slightly one hand, the doctors do not give us hope because she is 72 years old and they say they have not seen a case so severe as hers. I want to know if anybody knows about a case like this and if there was at least a partial recovery. Please help! we are very desperate to know, it has been 8 month and she suffers every day, she is not able to speak, to eat, to move or to do anything by herself. Any comments will be greatly appreciated. Thank you!

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