New GBS sufferer, my story after 18 months; advice please!!!
AnonymousMay 12, 2009 at 3:22 pm
This is only my third post around here. I joined this forum on Monday 11th May 2009.
If I may I’d like to share my experience of being a GBS sufferer and I’d also like a bit of advice.
I got struck down by GBS late November 2007 whilst in Belgium (Europe). I live and was born in England, UK.
First off, my professions. I’m a qualified concert pianist, and I’m also a professional video producer (TV cameraman). Both of which have come to an end; though the latter, I’m starting to get back into now.
After reading through the many threads on here, I suspect I have been quiet lucky.
This is how it happened to me. I was on a filming job at Arsenal football club in the UK in mid November, it was cold and whilst filming outdoors all day I picked up a cold. That week I was incredibly stressed out, I was feeling very low and was somewhat depressed and run-down i.e. my immune system was probably a bit low and not functioning right.
I then drove over to Belgium and a week later whilst eating a meal at the table I suddenly felt like I’d been drugged, my arms and legs felt very weak, 10 minutes later I sloped sideways and fell off my chair and onto the floor. My (then) girlfriend called an ambulance and the paramedics came after 10 minutes; they took my vitals and said I was fine. They asked if I had been stressed or overworked, I said yes and they just told me to get some rest.
I slept that night and the next day I felt very tired and could not move around too well, later that afternoon I had to call my girlfriend and ask her to come back as I felt very weak and strange. She came back and helped my down the stairs to her car, I could walk, but it was hard. We got to hospital (in Belgium, where I was staying) and I was so tired I had to sit down, my girlfriend went to book me in, a few minutes later I collapsed onto the floor. Nurses came and put me onto a trolly, next thing I know a tube/needle was been stuck in my arm and ECG wires were being attached to me to check my heart etc. They could not figure out what was wrong with me.
I got put on a ward and was on a drip/fluids as I had no strength to feed myself. I spent 5 days in hospital having tons of blood tests, cat-scans on my chest and head, a lumber puncture test and EMG shocks to my arms and legs and chest. It was on about the 3rd day in hospital that I staggered to the bathroom and struggled to take a shower, it was very hard lifting my hands to even chest height; I had to bend forward to wash my hair. I could always walk, but I shuffled my feet slowly along the floor, it was a struggle. I was never on a ventilator.
It was also about day 3 that I could feed myself, but it was hard work opening things.
They sent me home after 5 days, but I had to go back the next week for another EMG test (electric pulses to measure nerve conduction), at this point they were still not sure what it was. I went back 2 weeks after for another EMG test, at this point the Doctor doing the test said it was almost certainly GBS; I had feared this. He told me it could be 2 or 3 years for me to recover. However, my Neurologist told me I should make a full recovery inside of 3 months.
4 weeks after the attack, my Neurologist suggested I go in for a 5 day course of Imunuglobulin intravenous. I went in for this on December 24th and stayed in over Xmas for 5 days. This treatment gave me a cracking headache and it made my veins in my arm like steel nails, I could not bend my arms for about 3 weeks afterwards. Veins were hard and lumpy, could not bend arms to take shower etc; it was horrible.
By now I could walk, not as fast as usual, kind of half my usual speed, but I could walk around a shopping mall for 45 minutes or so; gently.
I was having physio on my hands and legs 3 times a week; still in Belgium at this time.
After 3 months, I could spend an afternoon walking; faster too, but not at full fitness and I still got tired.
I was getting better fast, I could see my overall levels of strength improving weekly.
I continued visiting the hospital every month for ENG testing, they said my nerves were improving in certain areas, and staying the same in others; overall, month-by-month my nerves were improving.
I came back to England about 4 months. Visited Doctor here to bring my local GP up to speed, he made me an appointment with a UK Neurologist, which proved useless. This UK Neurologist simply had his assistant check me over; this was brief, just a few questions and tapped on my reflexes with usual rubber hammer. Neurologist then chatted to me in his office for all of 5 minutes. He told me all my reflexes were back to normal and I had no muscle waste and I’d be fully recovered within a month.
This was rubbish, none of my reflexes were back, only marginally in certain areas and my muscle waste continued in my left hand only.
For the record, when GBS first kicked in back in late November, I felt my left arm and hand were weak before anything else; kind of like a ‘dead arm’ when you get punched in the upper arm. So I suspect my left arm/hand were the first to be attacked.
At the beginning I had dips in my shoulders were my muscle had wasted. But after 6 months of gym and physio my muscle in upper body came back and my shoulders and upper arms have muscle like before with no dips.
Today (18 months into recovery) I’m running around a badminton court beating my opponent. I can walk around Cambridge city all day, though I do get a tiny bit tired.
I feel like my whole body is 90% recovered, but, my left hand has continued to lose more muscle waste over the past 8 months. What I can physically do with my left hand has remained the same for the past 10 months. I’m typing this ok, but with my left hand I can’t use my little finger. For some reason, my left hand looks thin and boney and I can’t open my fingers out as well as with my right and my fingers on my left hand won’t straighten out perfectly straight and I can’t hold my left hand out flat, with my fingers together, my fingers on left hand curl inwards, especially my little finger and the one next to it. Also, I can’t do a ‘thumbs up’ sign with my left hand as the thumb won’t work that well.
It is only my left hand that has this residual effect left over from GBS. Because I’m concerned about the lack, or very slow progress of recovery of my left hand (and fore-arm/wrist) and the continued muscle waste; though latter might have stopped now; hard to tell. I told my GP and he maid me another appointment with a Neurologist, only this time, a different one in a different hospital.
I had my appointment yesterday and this new Neurologist told me he wants me to have an EMG test as he suspects that I might have the CIDP version of GBS and the EMG test will confirm this. I’m not sure if I could have the CIDP version as 18 months later I’m almost fully recovered; except my left hand, that continued to lose muscle over the last year.
The new Neurologist explained that the CIDP version continues to be progressive, but is it possible that only one part of my body hence my left hand could continue to worsen? It is not worsening in what I can physically do with it, just the muscle waste. Does CIDP work this way, or does it affect the entire body?
He told me if I do have CIDP version I’ll need either steroids, but he recommends Imunuglobulin every 2 to 3 months, each visit would involve a 5 day stay in hospital and this treatment would need to be on-going for perhaps 10 years. I don’t know what this Neurologists experience is with GBS, he looked over 60 years old so he should know what he is talking about. Does this make sense, what he says?
I suspect many GBS sufferers on here would consider me lucky; perhaps I am, if I have CIDP version though like my new Neurologist suspects I won’t consider myself lucky at all.
As I’m a (was) a concert pianist, it feels like my life is over. I got very suicidal because of this and gave serious thought to taking my own life on many occasions. The only reason I didn’t is because my Neurologist in Belgium told me I would play the piano again one day; though she could not be 100% sure, but she was totally convinced I had nothing to worry about.
Any advice on the possibility of me actually having the CIDP version, or my left-hand muscle waste problem will be hugely appreciated.
I still find the will to live very hard right now.
As for all you other GBS sufferers on here; my heart totally goes out to you; I MEAN IT!!! It is a horrible thing to have. I envy your will to continue living with it; I really do. I don’t know if I can continue with no Chopin and Beethoven in my life. I was a really good pianist and I won many competitions.
Whatever happens, I’ll keep you all posted and try and advise others the best I can based on my own experience; whilst I’m here on earth at least.
Thanks for listening.
May 12, 2009 at 8:31 pm
The ncv/emg would be a good reference point. Cidp usually happens to both sides, but there are variants and no one person is the same. If it is cidp, be open to this docs suggestions, he seems very reasonable, as some docs start w/steroids because they are cheaper. Your doc is advising ivig first that is very good. Good luck to you.
Dawn Kevies mom
AnonymousMay 13, 2009 at 6:28 am
Hi Nigel~ Welcome to the forum! So sorry that you had to go through all this and I do pray that you will see the Piano again playing like you once did. It can be very depressing to see your dreams and your goals get ruined by all this. But I hope they can get you back to normal again and you get to have the life you once had before GBS took over~ Nice to meet you Nigel~
AnonymousMay 13, 2009 at 9:36 am
Hi NigeL: I had GBS and won’t comment on whether it could be CIDP. But for 18 months out you sound like you are doing really well. It is too early yet, if you are in fact recovering from GBS and not CIDP, to know what will come back and what won’t. I heard a neurologist speak this past week on the two year rule and there is reason to think what you get back in two years will be mostly all you get back, but there are many exceptions. even with CIDP there is the possibility of remission.
All of us who have suffered from these diseases know what it is like to loose dreams and to make radical changes in life styles. Many of us find we like our new lives, but it can be depressing to think of what is lost. I hope you will take the time to deal with your mental health as much as your physical health. It is helpful to have someone to talk with, especially when life feels so empty. Life is never empty-we may have to make serious change, but there are usually powerful rewards for doing so. It isn’t easy though, so you might think about getting some help during the dark times. Good luck. Jeff
AnonymousMay 13, 2009 at 10:50 am
Hello Nigel and welcome. I got GBS in October of 2007 so we are close to the same time frame. There was a guy on here for years that has passed away that would say he got his feet back around the two years that Jeff is talking about. His name was Gene.That gives me hope as it should you also. My feet have been problematic for me. My Gbs stopped short of a vent,my feet were so bad I would wear shoes all day and night.I was a saxophone and Bass player in a christian praise team. I have been asked to perform at church in the end of June.I have not picked up my sax in over a year so this month I am going to start playing again. I think I should be able for the only thing left for me is my hands get tired fast and my foot pain that feels like walking on marbles.I hope that you can get a firm diagnosis so treatment if necessary can help you regain your hands. Have you tried any ocupastional therapy? (OT) therapy. That was very tough for me but I had an awsome therapist that worked my hands with splints and rubberbands and all kinds of stuff.
I hope you keep a positive outlook along with your determination to get treatment and diagnosis.
ron Ps was wondering how old are you? I am 54
AnonymousMay 13, 2009 at 1:54 pm
Hi All and thanks for the replies so far; please keep them coming.
I’ve recently turned 43 years old.
On December 1st 2009 will be the 2-year into recovery for me. So 7 months to go; so yes, I should be a bit optimistic about my left hand making a full recovery so I can get back to Beethoven sonatas and Chopin Nocturnes etc; I miss it so much.
When I last saw the Neurologist in Belgium it was late October 2008. Back then I was 10 months into recovery and she said she was 90% sure I had the one-shot type of GBS and not CIDP. At that time I’d had about 7 EMG tests and seen her about 10 times.
The CIDP thing just got thrown into the mix by UK Neurologist on Monday hence he wants me to have a new EMG test to confirm which type of GBS it is.
Like I said before, it is only my left hand that is not making much improvement and it has lost a lot of muscle waste over the past 10 months; but my left arm/hand did get hit first; it was the first thing I noticed, then the next day I collapsed with arms/legs and everything feeling weak.
I could be wrong, but surely if it was CIDP my Neurologist in Belgium would have spotted this during the first 10 months that I was seeing her each month and having EMG tests each month; which showed improvement on every monthly test. But with left hand there was only improvement in certain areas of it, other areas of my left hand stayed the same with no improvement.
Could be that my left hand is just going to take the whole 2 years. I hope/be positive that it is not CIDP. It would be so hugely amazing if I could play the piano again as I never made that many recordings before so I don’t have much proof; only my Performers Degree in classical piano playing on the wall. In hindsight, there are so many people who I would love to hear me play.
Everyone around here is so positive; I hope some of that can rub off on me before it is too late.
Thank you, thank you all so much.
AnonymousMay 13, 2009 at 4:04 pm
Hi Nigel! Never give up Hope! Hope can take a person a very long ways. It is your dream and desire that makes you want to play and because of that dream it will make you fight even harder to get well again! You have a goal set and because you have not finished that goal. Your going to fight every inch of the way to make that dream come true!
For some of us it takes a little longer and sometimes we don’t always become back perfect again. But this gives us a reason to become stronger and have that desire to do things that we can’t do therefore we end up somehow someway ending up doing it!
Stay positive and don’t let anything get you down. Good luck dear~ I hope that you get to see that piano again and hope to someday see you playing! Hugs
AnonymousMay 14, 2009 at 12:05 pm
HI Welcome to the gang
All I can say is you gotta keep trying an if worst comes to worst it reminds me of a Mash episode where this concert piano ist lost his left hand an he learned to play sheet music made for 1 hand an even started writing music for the 1 hand.
All I can say is you gotta keep going.
I lost almost everything as I went all the way down an I made it back about 75%. I doubt if I ever get the full use of my hands
AnonymousMay 15, 2009 at 5:55 pm
Your story is quite fascinating. I look forward to the day I can walk again. My right hand is as you describe your left. My neurologist used to tell me to pretend I was playing the piano to get my fingers moving again. My bony-hand look is starting to improve with a series of exercises my terapist has taught me. You may want to consult an occupational therapist, they can help you.
Your ability is a gift. If you can’t play, you may be able to use you knowledge and talent in a different way. Life is still worth living. Don’t let this disease get the better of you. I hope you can play again.
AnonymousMay 16, 2009 at 6:16 am
Thanks you Shie. I have consulted a hand therapist, she did give me some exercises to do, but I find some of them frustrating because I physically cannot get my fingers to do certain exercises that she gave me.
I won’t give up just yet; I’m getting more inspiration from these forums.
May 16, 2009 at 1:57 pm
I am 69 years old and have had GBS three times, the last time in 2002. I can play my piano but don’t do it much as I get tired sitting at the piano a long time. You can get better after two years. Good luck to you.
AnonymousMay 17, 2009 at 8:41 am
Barbara, so sorry to hear you have had GBS three times.
Does anybody know what the chances are of getting it a second time. I’ve read that there is just a 3% in 100 chance of getting it a second time?
I must admit, the thought of getting it a second time scares me a lot as I think it could be worse and I might need a Ventilator etc?
AnonymousMay 18, 2009 at 2:49 am
Hi Nigel! The chances of getting it a second time is there but extremely rare. Staying away from vaccines are one good option of protecting yourself from getting it again.Make sure you talk with every doctor you see and tell them about the GBS and get their advice before having any procedures done. You will see frustration and get angry that you can’t do things but in time things will get somewhat better. I think your determination is going to be what pulls you through! God bless!
AnonymousMay 18, 2009 at 3:17 pm
Keep the faith Nigel! Keep the faith and hope! Never let that go! Will power and determination is going to get you back on your feet! Anytime you get frustrated and feel like you need to let it out! We are here! One thing about this site is the good support that we all give to each other. We don’t always agree with each other and have differences sometimes but we all have to admit that there are times when we are needed in here. If not for ourselves but sometimes just to help others! Glad you have joined the site! Hugs
AnonymousJuly 1, 2009 at 1:06 pm
Hi Nigel, I just read through your entire post this morning, and I certainly sympathize with you.
I’ve been a music teacher for about 25 years–piano and guitar.
I’ve had GBS symptoms since my flu shot in November 2007, and I’ve got a lot of crippling; my doctor has ignored my symptoms and this whole experience so far has been hell on earth for me.
As you can see, this site is set up to be supportive and informative, as much as we know how to be for each other.
So here’s my input.
You played Chopin and Beethoven in concert, and recorded too!!!
That’s wonderful! I’ve often performed in public, but mostly I’m an instructor, though the GBS has changed everything for me too.
I just want to ask you some questions?
Right now your big problem is your left hand, right? Can you still play 3 note chords, 4 note chords & ascending and descending arpeggios with it? Can you still play your warm-up scales and regular Hanon exercises? Is it a strength issue, or a control/co-ordination issue or both? Are you right-handed or left-handed, and what size are your hands? Narrow, regular or broad; long or shorter fingers?
My own ability to play piano and guitar has been greatly reduced because of muscle weakness, control and co-ordination issues. Yet, some days are better than others. However, because I play and teach guitar (including classical), my own left hand is stronger and better-developed. That’s because it takes strength just to hold the fingers properly over the frets, place them exactly behind the frets, and press firmly enough to create clear sounds. If you are willing and able to do this, I would highly recommend some basic left-hand guitar training with a classical guitar instructor. The exercises could strengthen your left arm, wrist and hand as the hands of a musician need to be strengthened. You seem to have lost basic left hand strength, and the finger-curl you are describing might actually be useful in assuming correct classical-guitar playing position in beginner’s exercises, which could be beneficial towards improvements in your left-hand strength and control over time (and for piano).
Now, I know it is hard to be/feel diminished in your performance, but do you still have any of your early training sheet music pieces by the composers you love? I’ve found some comfort in that; in some things I’ve had to go back to the basics again. You could improvise or alter that left hand part, re-creating a basic LH chording or arpeggio structure, while you play the RH at a much higher technical level of expertise.
I know that this illness has aged my hands by 20 years; but sometimes when I’m trying to put things in perspective, I realize that things would have changed anyway, over time, especially as I got older, and the skill I had taken a lifetime to acquire would have diminished and been lost. I try harder than ever now to pass on the knowledge and experience I have, to the music students I still have left. Music is a wonderful and powerful gift, and I’ve been blessed to have and share what talents were given me. But even though I’ve changed, and things have changed for me, music will continue in its many forms. I’m adjusting to these changes, still trying to overcome my losses, looking for ways to keep reconstructing what is left to work with.
The mental and emotional toll this illness takes on us is terrible.
But life is much more than our musical talent and expression, so embrace it.
What we are learning now will be much more difficult than presto/allegro scales and complex counterpoint. Remember the frustrations and struggles of the days of our early training, and then again in the intermediate and advanced levels?
God will see us through all of this, as our Teacher and Comforter.
Take good care of yourself.
Bye for now.
AnonymousJuly 13, 2009 at 11:04 am
I have had the “priveledge” of going through Guillian-Barre Syndrome twice. I had it diagnosed in 1994 and then again in 2007.
Both events with me were following extremely stressful periods….studying for final exams the first time, and surviving through a horrific ice storm the second time.
I’ve read your posts with interest…I too used my hands as a “gift” if you will. I typed words in a Courtroom setting at speaking speeds I have adapted and use a stenomask. With that I’m able to dictate words in the same Courtroom at any speed and then type those words later in written format. I use a standard keyboard and can type around 100 words a minute now…and always getting faster.
When I was in rehab, I typed for my occupational therapist at less than two words per minute…2!!! Now, I am able to complete my transcripts on time, and with no delays in time (my last one was almost 800 pages.)
I write this because I don’t want you to lose the idea of playing again, and soon. Frustrated at times? Are you kidding me, one week I was pulling people out of homes and performing rescues in the ice storm, the next week I was started on tube feedings that lasted over a month….and so on and so on.
As hard as it is, keep going. No matter what. Rest is exactly what you need, but when you’re ready, hit it hard, and work towards your goals.
I’ve been able to work on building a house for my wife and little girls….I’m ALMOST done. I began stretching carpet just this past weekend.
Again, hang in there and be safe.
AnonymousJuly 23, 2009 at 9:55 pm
Hi Nigel, I have a “slow” left leg, and it was the first place my GBS started. Some days I feel like it is a foreign body. You sound like your recovery has been awesome. I am almost at 2 years. The NIH in the US came out with a study which showed continued improvement going on 5 years. That keeps me hoping. Some of my muscles look great, others still seem very limp. But I luv that twitching, usually means something positive is happening. Luv2sail
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So sorry I have not posted for a few months; I’ve been somewhat depressed about all this .
D.U. encouraging words (as from all of you). My hands are long and slender and I can’t play arpeggios or scale cycles with my left hand at all. I don’t have the strength. To give you an idea, I can manage Bach’s Prelude number 1 in C from the 48 and the first mvt of Beethoven’s Moonlight, but the latter is mainly octaves held in the left hand, but my 5th finger left hand can’t hold down a note so I do octaves with my 4th finger instead, I have a big span.
My left hand continues to get thinner and more bony looking, even 20 months after my acute attack of GBS; not sure why I’m continuing to loose muscle wasteage after this amount of time. It is not chronic, it was a one-off acute form.
I’ve tried classical guitar, I used to play a bit, but no way do I have strength to hold a bar down.
Brett, I feel for you having it twice. The stress I was under when I got GBS was huge, and my ex girlfriend put me through a ton of stress over the following 15 months after GBS while I was actually trying to recover, she was a total she-devil to me during this time putting so much stress on me; it was terrible. Of course we are no longer together now.
This happened to me in December 2007 so it will be 2-years in December 2009; just over 2 months away. So I too am encouraged by the fact that it can take longer than 2-years to fully recover.
I try and steer well clear of stress and worry these days, though sometimes it is very hard.
Thanks all and my prayers go out to all of you who are still in the recovery stages.
AnonymousSeptember 27, 2009 at 1:42 am
Thanks for posting again Nigel, we’ve all been thinking about you and praying for you. Come here often, because we know and we care about what you’re going through, and we’re here for you.
Some more of my thoughts (bear with me):
When you play the piano now, are you playing tense or relaxed?
Set your fears aside, just concentrate on recapturing your joy of the music. Your brain is rebuilding a lot of connections, so be good to yourself during the healing process.
Some days I can do a lot, other days it’s too much for me. Lately, I’ve been pushing myself to try to learn some pieces I’ve always loved:
“Baker Street”, and some songs by Enya. Bar chords are hard for me too, but on an electric guitar, they’re smooth and easy with the right touch and technic. The amp does the work. If scale-work is too much right now, why not try some 5 finger position exercises, and let your brain redevelop these connections. Have patience…it’s happening, though we can’t see it.
Also, I find that I’m better when I’ve been eating lots of protein regularly.
My concentration and strength improve then. So when I’m feeling weaker than usual I eat ground beef meals, whole-grain cooked cereals & breads, scrambled eggs, and my strength goes up in a little surge which lasts for days.
Truth to tell, the first year of my GBS, I hardly touched my piano; I could hardly bear to sit down and fumble my way around on it. I could still play a little, but then suddenly my concentration would vanish and everything would be clumsy and shaky. I keep my hymn books on the piano rack all the time, and some of my favourite pieces and songs with meaning.
Nowadays, although my skill has diminished, at times there is actually more depth and feeling in the actual expression of the music than before. So in that way, adversity is good for the soul and for the soul of a musician.
Just the other day, I was able to play a more difficult piece, which is encouraging. It’s been 2 years of GBS for me too; I got the flu shot mid November 2007, and the symptoms started a couple of days later, the cramping a couple of weeks later, and by Christmastime it was full-blown.
Just be sure to take good care of yourself; we all deal with the mental and physical strain of coping with this condition, but like a wise teacher/musician once told his class and his audience….”We never, ever, ever, ever give up!”
Blessings be upon you for your well-being and for continued improvement!
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