The diagnosis that changed my world, Guillain Barre Syndrome.
The following is my personal account of the events leading up to a diagnosis, treatment, and recovery with Guillain Barre Syndrome. I’ve written it out in blog form and also recorded a podcast about, which can you listen too via the player above or at the end of my story.
This post is intended to shed light on this rare disease from a personal perspective, that affects less than 1 in 100,000 people each year. It’s my hope that you’ll find it informative, validating, and encouraging as I take you into my story from what I considered my “normal life” to the new normal now.
It’s about a week before Christmas, and things are humming along like usual. I’m going about my daily routine, my weekly routine, completely oblivious that something was coming up on the horizon that would turn my life upside down.
Let’s back up for a minute, and set the stage first, shall we?
My youngest son comes home from school about 10 days before Christmas, complaining that his throat hurts and a stuffy head. I can hear that dreaded “hoarse” cough as he walked through the door and immediately thinking to myself, “where are my vitamins, I’m not getting sick over the Christmas holidays!”.
As the days rolled on I did my best to keep myself pumped up on immune boosting vitamins and such, and following my son around with a can of Lysol, cleaning everything he touched so I wouldn’t accidentally touch anything that he did and get those germs. Long story short, less than a week later I woke up feeling like I got hit by a truck; all the same symptoms he had. “Are you kidding me, I thought…. Now? Just what I need.”
I tried to find a positive spin, figuring that I still had just under a week to fight this off and still be able to salvage the holidays and my much-anticipated vacation through New Year’s. Once again, I started pounding every immune boosting supplement possible, and trying to get extra rest when I could, but as the days went by, it just kept hanging around, moving into my chest and making breathing difficult.
I’m not one for going to the doctors very often, and true to form I didn’t bother this time either. It didn’t feel like the flu (I had gotten a flue shot a couple months before), but it was definitely something wicked that decided to take up residence in my chest for an extended stay.
I managed to make it through Christmas morning and make my kids their annual Christmas breakfast before they all went off to their moms for dinner. I enjoyed myself, trying to hide any discomfort and just fight through it, and to my credit I mostly accomplished my goal. After they left I mostly rested for the remainder of the day, completely aware that I had overdone it and pushed myself too much. Hey, in my defense, as a parent I covet the times I get to see and hang out with all 3 kids and no annoying virus was going to get in the way of those precious memories. For better or worse, that’s what I did and I’d be lying if I said I wouldn’t likely do it again under the same circumstances.
Suffice it to say that the upcoming week that was supposed to be spent doing fun things and relaxing, was spent mostly staying home, either on the couch or in bed. The two older kids checked up on me and my youngest did his best to keep my cup full of Ginger Ale or Orange Juice. Occasionally I’d have some yogurt or pudding since that was easy to swallow. The only good thing about that week was that I was able to catch up on some Netflix series I wanted to watch.
The virus party in my chest continued to thoroughly enjoy itself at my expense right up until about December 29th. I finally started to feel like I was getting some strength back, and slowly began to venture out a bit. That light at the end of the tunnel that seemed like an oncoming virus train about to run me over again, was actually looking more and more like the relief I’d be desperately seeking.
New Years eve I felt pretty good, but I certainly wasn’t in a partying or particularly social mood anyways. I’m not much of a partier anyways, those crazy days of my youth are long gone (thank goodness); I was just thankful to not be so miserable.
“This was one hell of an epic virus, I thought. I haven’t had something hit me this hard in years. I guess I was just due”.
January 1st – My youngest is back after spending the weekend with his mom. No big plans other than going over to my help my friend set up her new TV. I’m still feeling a bit queasy but I’m at least functional and able to get out of the house more now. I’m definitely feeling like the worst is over and I’ll be back to my normal routine in no time.
Speaking of routines, mine consists of working 40 hours at my day job, and then what I affectionately refer to as my other full-time jobs:
- Running BeyondYourPast.com and my Life Coaching programs – Continuing to work on some new online programs that I’m planning on rolling out in 2018, updating the site, following up with email inquiries, and of course working with clients throughout the week.
- Running SurvivingMyPast.net – getting new guest blog posts ready, updating the site, making improvements, and following up with email inquiries.
- Social Media – keeping post schedules going, responding to tweets, Facebook posts, and Instagram traffic.
- Podcasting – I record a podcast each week, and spend considerable time reaching out to potential new guests as well as editing the show and writing a blog post about it that gets posted up on the blog on BeyondYourPast.
- Ongoing training – After finishing up my most recent certification, I’m continuing to explore new programs and educational opportunities that will help me to be the best coach that I can be for my clients.
- Collaborative efforts: A colleague and I are working on launching some online programs and group coaching collaborations in early 2018. We have weekly conference calls and regularly exchange brainstorming emails and other correspondence to support those efforts.
- Life: Of course, there’s life that happens in the midst of all that too, and somewhere in there I find time to get a bit of sleep and eat.
So why am I telling you all of this? Well it gives you an idea of what life was like, and how much of a drastic change was about to take place that caused all of that to come to a temporary screeching halt.
If you’re thinking, “how in the world does this guy find time to sleep or just relax”, you aren’t alone. I wonder that half the time too. I always preach about taking time for yourself, resting, and doing good self-care. Those are very important things for a trauma survivor, and really for anyone to be honest.
I actually do find time to enjoy myself a bit and I’m more than willing to sleep in when I get the chance, but admittedly I could be doing a better job at it…and little did I know that I’d be forced too in the very near future.
January 2nd – Back to my day job after a very anti climatic vacation. I wake up Tuesday morning at the usual time, and something just doesn’t feel right. I’m feeling a bit weak and very anxious for some reason. “Eh it’s just the first day back to my day job, I’ll be alright”.
As the work day went on, I felt worse and worse. More weak, tired, no appetite, but very thirsty. It wasn’t really a sick feeling, just really run down.
I managed to get through the day and came home completely exhausted. I made something easy for my 15-yr. old to have for dinner and went up stairs to bed. As the evening wore on I started getting some wickedly intense headaches in the back of my head, stretching from ear to ear. These sharp, intense pains were unlike any other migraine or headache that I’d ever had. To be honest it scared me a bit because it was like someone was trying to punch through the back of my head.
Migraine meds took the edge off, but not by much. I was up most of the night, unable to sleep from the pain and still feeling very weak. I also noticed something else quite strange, my lips and tongue felt like they were a little numb and swollen, which made speaking somewhat difficult.
January 3rd – I would say that I “woke up”, but I never really slept much in the first place. I called in to work and advised my boss there was no way I was able to make it in with these headaches. I spent the day in bed, with no relief in sight and feeling like my lips and tongue were continuing to get worse. I figured maybe it was an allergic reaction, but I hadn’t had much to eat in the last 24 hours or so.
I found it difficult to speak properly, unable to properly annunciate words and also feeling like my voice was weak and hoarse. I racked my brain wondering what could be causing this; and since I had so much time on my hands I started doing some research online, taking frequent breaks due to the headaches and glare from the screen).
I typed my symptoms into Google and came across what I figured was at least part of my diagnosis. Tension Headaches. These can be caused by stress, inadequate sleep, and poor posture. Check, Check, and Check…yep that’s me alright.
I called my family doctor and was able to get in for an emergency appointment. After giving her the run down of everything that was going on, the first thing she did was check for signs of a stroke.
- Eye movement – Check
- Grip in both hands – Check
- Touch my nose with my fingers – Check
- Press up and down on my feet – Check
- Able to stand up and not feel unstable when she pressed on either side my upper body – Check
Satisfied that things were looking good, she too thought it may be an allergic reaction, but again I couldn’t think of anything out of the ordinary that I had eaten or drank recently. Still it could be something new, so she gave me an allergy pill to take, and said that if things didn’t start looking up by tomorrow, that she would call in a prescription of Prednisone.
Things continued to deteriorate for the rest of the day, and again another sleepless night caused greatly the continued headaches that yet again flared up more at night than during the day.
January 4th – I was really beginning to get worried now, so I went to my local urgent care first thing that morning. Upon examination they too thought it could be a stroke, but I passed all of the tests again, just like the day before. Today my speech was much worse than the day before, and even communicating with the doctor was a challenge. Fortunately, I had prepared for this situation; I wrote down all of my symptoms and what I’d tried so far and handed that paper to the doctor. This came in quite handy and made the visit go much better than the one the day before.
The doctor on staff said he thought it could be an allergic reaction, but that I didn’t really look that swollen based on pictures of me from before that I’d had on my phone. They decided to give me a steroid shot, which should start working much quicker than just pills alone.
After getting the injection…OUCH! I got a prescription for a weeks’ worth of prednisone to start the next day. (unbeknown to me at the time, this was a critical piece to my eventual diagnosis and treatment).
They told me to go home and rest, and that if things didn’t get better (or got worse) in the next couple of days, to call 911 or check myself in the emergency room. Of course, I didn’t want to hear that, and thought to myself, “this shot should do the trick, and I’ll be fine in a few days”.
January 5th & 6th – More of the same over the next two days. The headaches persisted, my speech was still deteriorating but not quite so rapidly at least. I was still unable eat much of anything; my diet continued to consist of nothing more than yogurt, pudding, and the occasional mac n cheese cup. Anything that involved chewing just wasn’t happening. Food would just literally fall out of the sides of my mouth and since my tongue was seemingly useless for the time being, chewing was next to impossible.
Overall, I was feeling weaker by the day; which I attributed too a lack of any real food and just feeling run down and exhausted (again another sign that would prove pivotal in the coming days). By Saturday evening, January 6th, I came to the conclusion that if I didn’t feel better by the next morning, I was going to the ER. No more waiting, enough was enough.
On top of all of that, I was noticing something else…my eyes didn’t seem to close the whole way and they were really beginning to water and itch regularly. When I tried to wash my face or take a shower, the water would get in my eyes, which also meant that of course the soap got in there too.
January 7th – I knew that the local hospitals weren’t normally busy on Sunday mornings (they have billboards along the highway that show the wait time for an ER visit). I got dressed and headed in about 8:30am. Thank goodness there were only two people there, both of whom had already been checked in, so I was able to walk in and get started immediately.
The attending nurse took all my info and got my vitals, and I handed her the same paper I had wrote out for the previous doctor. She finished up and said to go have a seat and they’ll call me.
About 10 minutes later they had an ER bed for me and I headed back. Finally, I’m going to get some answers, I thought to myself.
The first nurse came in, asked me what was going on. I referred her to the paper included in my charts, that outlined everything so far that was going on. She again ran the same tests for a stroke, and again I passed them. By this time my voice nearly inaudible, and all I could do was mumble. Even speaking very slowly and deliberately offered only a modest ability to comprehend what I was trying to say.
A doctor came in, and again asked me all the same questions, did the same stroke tests, and said that he thought it could be Bell’s Palsy. That would explain the muscle weakness and the onset after a virus (both of which are common with Bells Palsy). However, it didn’t explain why both sides of my face were affected, since Bells normally only manifests itself with a drooping on 1 side of the face. It also didn’t explain why I wasn’t able to taste much of anything. It was like my taste buds were completely non-existent.
Two more doctors came in, asked me more questions. You can imagine by now that not only am I tired of trying to talk, but also very frustrated at my lack of ability to effectively communicate. I was a complete stoic, monotone by now, with no ability to smile, laugh, move my lips hardly at all.
They could also see that when I closed my eyes, they didn’t close the whole way. I told them about what happens when I try to wash my face, and the soap getting in my eyes. They advised that since my eyes weren’t properly closing, that means that I wasn’t blinking normally either, so my eyes weren’t getting lubricated effectively and therefore I would be susceptible itchy, watery eyes as well as glare and bright lights.
I asked what caused this, and they deduced that because I had such diminished motor control on my face, that my eye lids were also affected. Still though, while Bell’s Palsy did seem to fit most of my symptoms, it didn’t make sense that my entire face was affected.
By this time about an hour or so had passed and there had been at least 6 or 7 doctors come in, all asking the same questions. Finally, I was like, “don’t you guys talk to each other, like…at all?” I was trying to not seem ungrateful or rude, but this was getting old really quick.
After some additional time one of the first resident’s that came to see me, was back. He said that it’s possible that I could be one of the rarest cases of Bell’s Palsy in the country! I was like…What?? As he described, there are extremely rare cases where Bell’s can manifest in both sides of the face, but the chances of that are about 1 in 5 million!
He wasn’t sure yet, he said, but if that turns out to be the diagnosis, they wanted to know if they could video me for training classes and medical journal articles about rare cases of Bell’s Palsy!
“You want to do what, and you think I have WHAT?” I said? Is this treatable, I asked?
He said that it was but that again, they weren’t sure yet. By this time my daughter and her husband had come in to see me and heard the breakdown. I looked at my oldest with disbelief…” this isn’t happening to me” I told her…this is all a bad dream.
Another doctor, one of the original half dozen who’d already been in to see me, came back and said they were going to order some tests awhile to start figuring this out.
- CT Scan
- Full blood panel
- Ultra Sound of my Carotid Artery
My middle son, my brother, and my mom had all arrived about the same time, and my daughter gave them the run down on what had happened so far. They were in disbelief as much as I was.
“Leave it to you to come down with some kinda crazy rare disease”, my brother said jokingly. I was like, “yeah it’s just my luck. I’ve never had anything worse than the flu, or even been in a hospital and now I’m stuck in the ER for who knows how long with something so rare that most doctors have never seen it”.
So, they started an IV, over the next few hours various staff members were in out running these tests while I laid there in this ER room. Thankfully the phlebotomist was amazing! For as much as I hate needles, I barley felt the IV he started.
By now it’s late afternoon and all of the tests so far were negative; the only thing they found in blood work was high blood pressure. I already knew about that since I had been on BP meds for years, and things were in check. Of course, it was elevated more than usual, but they attributed that to being in the hospital and feeling a lot of stress about what was going on.
Still perplexed and not convinced that I was the exceptionally rare case of Bell’s Palsy, the primary doctor on duty said they wanted to admit and run some additional blood work as well as the MRI and Ultrasound.
I asked why they couldn’t do all that today, “We don’t have staff available now to do an ultra sound or MRI, those will have to be doing tomorrow morning so in the mean time we want to keep you here and monitor you until we can figure this out”.
My heart sank, again I thought “this isn’t happening”.
I can’t just go home and come back tomorrow, I asked? “Nope, we need to keep you here and start a high dose of Prednisone awhile”, the doctor advised.
I reluctantly gave in, knowing that going home wasn’t going to offer me any peace anyways.
So here I am, laying in an ER thinking I was either going to die or at the very least, be this way forever. My mind was going in a hundred directions at once, living on pure emotions and thinking about every worse possible outcome imaginable.
I’m usually a pretty down to earth, grounded type of person, who can regain my composure relatively quickly in trying circumstances but this was something I’d never dealt with on any level before and my emotions were getting the best of me for the time being.
I spent another hour or so in the ER bed with my kids, my brother, and mom still there, when they finally came in said my room was ready.
Wouldn’t you know it, just as they are wheeling me down the hall, the fire alarm goes off! (You can’t make this up!). Suddenly my nurse parks the bed along the wall in the hallway near and elevator and takes off with a fire extinguisher. Meanwhile I’m in a hospital gown, in bed, my kids have all my stuff and we’re just hanging out wondering what we were supposed to do.
Two nurses were walking by and asked, “are you ok?”
I was like… “well, I’m in a hospital bed, alone in the hallway, there’s a fire alarm going off and my nurse just left”.
Thankfully it was a false alarm, and the two nurses stayed until my nurse returned. This was not exactly turning out the way I’d hoped, and I hadn’t even gotten to my room yet!
Of course, the elevators weren’t working, I mean why would they right? The fire alarm had them disabled still so I had no choice but to walk if I was able. So, my kids gathered my stuff, and I wrapped myself up in a blanket and did my best to tie my gown shut, and proceeded to walk up two flights of stairs, still very weak and a bit dizzy.
Here we are, 3 kids and their dad who’s apparently a super rare case of something that many people never even heard of, and 1 nurse, all making their way up to my room…. Like I said, you can’t make this stuff up right!
Finally, after another 15 minutes, I walked into room 204…and I actually breathed a slight sigh of relief. A private room!
I was dreading having to be in a room with someone else, and I prayed in the hallway on the way up that a private room would be available. The creator was hearing me and answered that prayer.
The last thing I wanted to do was deal with somebody I didn’t know, while I was going through something I didn’t understand.
The rest of the day consisted of vitals every couple of hours, another round of blood taken from my arm, and the doctor stopping in to tell me that the MRI and Ultrasound were scheduled for tomorrow morning.
All I could do now, was wait. My middle son went back to my house to pick up some clothes and things, and get me some Gatorade to drink, and most of the family had gone home for awhile but said they’ll check back later.
Hospitals are a lonely place when have nothing to do but watch TV and try to sleep. I emphasize “try to sleep” because who can really get any rest when nurses and doctors are coming in constantly to talk to check on you or run more vitals.
My sister in law came in later that evening to hang out with me, and my middle son stayed until I was ready to try and sleep. I’m so thankful that I had the support there during this whole ordeal…which was just beginning.
January 8th – After a night of vitals, headaches, and routine check ins by nurses, I awoke from what little sleep there was to be had to a surprisingly decent hospital breakfast. Even though I couldn’t eat most of it, the taste wasn’t near as bad as what you typically think hospital food is like.
My voice still wasn’t any better, I was very weak, and my ability to taste was virtually non-existent.
The doctor came in and advised the nurse would be in shortly to do the ultra sound and then the MRI after that. I asked how soon it was that I would be able to go home, and he said possibly on Tuesday depending on what the tests showed, but he couldn’t say for sure.
The ultra sound was no big deal, and it was actually kind of cool to see my carotid artery on the screen and hear my heart beat. After about 20 minutes the test was over and she left; the results would be reviewed soon and they’ll let me know. I had nothing else to do but wait and was just thankful that so far, the tests weren’t painful…I’d already had enough needles to last me a lifetime. (little did I know what was coming the next day).
In the mean time I was dreading the MRI because I am a bit claustrophobic. Since this hospital didn’t have an open MRI, I was concerned with how I would handle that situation.
My mother came in to visit after the ultra sound, and while I was grateful for everyone who came to see me, communicating was very difficult and frustrating.
Think for a minute how much you talk, smile, or laugh through out any given day. It’s something we often take for granted because you just don’t think about until you can’t do it. Then that you realize just how many other things in life you have taken for granted…until now.
Anyways, a staff member came in shortly before lunch to take me down to the MRI. Admittedly I was feeling quite anxious because I knew it was enclosed and I didn’t know how long it would take.
Once we got there, they had to take off the heart monitor sticky pads. I swear that was probably worse than any pain I’d had up to this point. Those things stick on your skin like glue and taking them off also means that you have virtually no hair left on that spot either.
The technician said the procedure would take about 20-25 minutes, and that I’d have to be perfectly still.
“Oh great, a claustrophobic guy who’s already nervous, and been stuck in a hospital for two days now, unable to talk, very weak, and now you’re going to stick him in a long, noisy, tube that seemingly has no way out!”
Yeah, my emotions were running high and grounding techniques were not doing the trick so far, but I knew I’d have to find a way through this ordeal. I asked her to give m a minute to compose myself. I got on the long table and began to do the following:
- Slowly close my eyes
- Slowly bring my breathing back down to a normal rhythm
- Began to count my breaths and do some mindful, cleansing, breathing. Breath in for 4 seconds, Hold for 4 seconds, Exhale for seconds.
- As I felt more at peace I began to meditate and pray, focusing on my breath and the thoughts that helped keep me calm.
- I gave the tech the thumbs up sign and she moved the table in and started the machine.
I caught myself feeling panicky a few times but I managed to keep it together by refocusing on my breathing, and eventually I made it through the experience.
After that there was nothing else to do but wait for the results, and of course for the regular influx of hospital staff doing their checks, vitals, and more blood vials. Family members came back in during the afternoon to keep me company, several of whom were there when my doctor came in and said the MRI was clean and my ultra sound was good. No stroke for sure! That was the good news.
The bad news, they still weren’t convinced it was Bell’s Palsy and so he was calling in a neurologist. That meant that I was going to be there at least another day most likely, maybe more. Ugh, just what I wanted to hear. Nobody knows what I have, or how I got it, or how to treat it other than to continue with high doses of prednisone until they could figure this out.
The neurologist stopped in later that evening and ran the same types of tests, but also checked my reflexes and nerve stimulation in my handle and feet. “Maybe we’re finally getting somewhere I thought to myself”.
She said, “I have a hunch as to what this may be, but I have to run 1 more test to be sure…it could be Guillain Barre Syndrome”.
“Come again”, I said…what in the world is that?
In a nutshell, it’s a rare disease where your immune system attacks your nerves and damages the sheath (myelin) that covers the nerves and helps them function properly. She goes on to explain that while there is no known cause, most cases arise after a bad viral infection. It starts usually in your feet and works its way up effectively damaging the nerves all through out your body and eventually leading to respiratory failure and needing to be on a ventilator for a week or two until treatments kick in and you’re able to breath on your own again.
“Are you kidding me!!!” I said, “I’m going to be on a ventilator soon?!”
“No, I don’t think so”, she replies. If it is Guillain Barre, we’ve hopefully caught it soon enough and the fact that you’ve been on prednisone for about a week now may have helped to slow the progression. (Remember earlier when I said I got that shot of steroids at the urgent care; as it turns out that may have saved me from a much more critical experience).
“Had you not gotten on the medications so soon, you might not even be able to walk or move right now, but we have to run a test to make sure that’s what it is before we start treatment,” she continues.
“What’s the test”, I asked.
“The only way to tell is with a lumbar puncture”, she says.
Cue the disbelief and apprehension….. “a spinal tap? Are you serious? Can’t you just take some more blood instead?”
As it turns out, the only way to test for GBS (Guillain Barre Syndrome) is by extracting spinal fluid from the base of your spine.
Because the signals traveling along the nerve are slower, a nerve conduction velocity (NCV) test can give a doctor clues to aid the diagnosis. In Guillain-Barré patients, the cerebrospinal fluid that bathes the spinal cord and brain contains more protein than usual. Therefore, a physician may decide to perform a spinal tap, a procedure in which a needle is inserted into the patient’s lower back and a small amount of cerebrospinal fluid from the spinal column is withdrawn for study. *
So now on top of this whole experience, and having neve been in a hospital before, I was now going to be getting what is routinely referred to as a “quite uncomfortable” (aka painful) procedure. It took every bit of anxiety fighting techniques to keep from freaking out, but I knew there was no other alternative. If I was going to get some answers and treatments, I had to go through with it.
At least, if nothing else, I had a potential diagnosis that seemed to fit everything that I’d been experiencing so far.
- Weakness in my lower body
- Tingling/Numbing sensation in my toes
- Virtually no reflexes in my left leg, but very hyper active ones on the right side (rare to have this, but not unheard of. Usually the lack of reflexes is in all extremities).
- Lack of muscle control in my face and mouth.
- Inability to taste, or use my tongue to help formulate words.
- Difficulty chewing, drinking.
- Eyes not closing completely, inability to properly blink, sensitivity to light.
But I still had to make it through the test, which wasn’t happening until the next morning. I texted my kids and told them what was going on, and replied to a group text that I had going with family members so they could stay updated when they weren’t in visiting.
A sleepless night was already quickly coming, but now I had to deal with the thoughts of this procedure the next day. One positive thing was that the headaches were starting to go away a bit, so at least I could doze in between the nurse visits overnight.
January 9th – This is when I began to find great comfort in listening to some old hymns that my dad always used to sing, and listening to old gospel songs. My go to genre of hard rock just wasn’t cutting it. I needed to stay calm and find some peace during this time.
I laid in my bed in that room, quiet and still, meditating, praying, and intermittently staring out into nowhere. I didn’t want to see the outside; the trees and birds, the sunshine, none of it interested me at all. It was a difficult night and morning to say the least. A constant struggle to stay present and grounded and not let anxiety get the best of me.
Finally, about mid-morning they came to take me down to radiology for the procedure. I made sure my phone was charged up, music was ready to play, and that I had my headphones with me. I pointed out again to the doctor and staff waiting for me, that I had PTSD and lived with the effects of Complex Trauma from my childhood. I asked if they could keep that in mind when discussing any procedures with me or potential diagnosis, as well as during the procedure.
There’s no shame in telling your care givers that you have PTSD. My family doctor knows it, as does my dentist.
Before we start, the doctor proceeds to tell me everything that could possibly go wrong, including infections and that I could be paralyzed from the waist down. Of course, this is extremely rare he says, but he has to tell me anyways.
“Really now, do you have to tell me all of that?”, I said. “You can’t just put it on a form for me to sign and deal with later?”
I knew they had to disclose that information, so I asked those questions in a bit of a sarcastic tone, knowing full well they are just doing their job. It didn’t make me feel better but at least I got it out anyways. Thankfully they saw the humor I was trying to use and were understanding about the whole thing.
Without going into all of the details, essentially my procedure was as follows:
- Lay down on my stomach on a radiographic table.
- The sterilize the general area and then give you a local anesthetic to help numb you and ease the pain.
- The equipment typically used for this examination consists of a radiographic table, one or two x-ray tubes and a television-like monitor that is located in the examining room. Fluoroscopy, which converts x-rays into video images, is used to watch and guide progress of the procedure. The video is produced by the x-ray machine and a detector that is suspended over top of you while lying on the table.**
- They insert a hollow needle at the base of the spine and draw out the fluid.
- You have to lie perfectly still, and the fluid doesn’t exactly flow out quickly, it takes some time.
- The whole procedure, for me at least, took about 25 minutes from start to finish.
It was, without a doubt, one of the worst experiences of my life. Not that I’m trying to scare you if you would ever need this procedure, but I’m just being honest. The local barely did anything to help, and the needle used for the fluid extraction, well let’s just say I felt it the entire time. I nearly passed out several times, my temperature shot through the roof, and I lost all color in my face. The nurses quickly put ice packs on the back of my head and cold wash cloths on my face. I was dripping in sweat and barely coherent; hardly able to answer their questions.
By the time it was over, they had successfully gotten the fluid needed…thank goodness, but I was still mostly “out of it”. I believe they went through two ice packs and a half dozen cold cloths to bring my temperature back down to normal. I was unable to talk, even more so than before, so I was using hand motions and nodding my head to answer their questions as much as possible.They wheeled back to my room and that’s the last thing I remember other than my mother being there when I came back. I don’t know how long I slept or if I actually passed out again in my room but when I woke up I could barely move. Not because they wouldn’t let me, but my energy was so low and I was so weak and traumatized that I was literally stuck motionless until my body had time to recover. When I came too, apparently my boss had stopped in to see how I was doing, and my mother was there, but most of that morning and afternoon is still a blur in my memory.
I hadn’t had anything to eat since dinner the night before, and no desire to eat anything that day either, so I was even more weak and could manage to drink a little bit here and there. After that ordeal, the only thing I wanted to do was rest and be left alone for a while. I couldn’t believe I made it through and I was just so thankful it was over. Now all that was left to do was wait for the results that evening.
Family came in again to check on me and ask about the experience. I did my best to recount it as best I could, and my story was met with a lot of cringes, and “oh my goodness” replies, “wow” and “are you serious” responses. They couldn’t believe how much had happened, how I came down with this, and what a difference just being around me was from what they were used too.
I’m normally a person who laughs and smiles a lot, enjoys conversation, and likes doing things like going to the shooting range, and for walks, and of course being a podcaster and blogger. All of which require you to do all the things that I could now not do.
They were very supportive though, I’m so thankful for that.
Around 7pm the neurologist stops in and says, “the test came back positive almost immediately, we know for sure that it’s Guillain Barre Syndrome”.
“Are you absolutely sure”, I said? Are you sure there aren’t any more crazy procedures and tests you have to do? “No more traumatic adventures with needless the size of 2-liter bottles that you’d like to stick in me again?”
She sensed I was at least trying to formulate a chuckle during my reply. Thankfully she was understanding, and assured me it was GBS beyond a doubt and that were treatment options.
There are two primary treatments for GBS:
- IVIG Fluids – high-dose immunoglobulin therapy, doctors give intravenous injections of the proteins that, in small quantities, the immune system uses naturally to attack invading organisms. Immunoglobulin is derived from a pool of thousands of normal donors. Investigators have found that giving high doses of immunoglobulin to Guillain-Barré syndrome patients can lessen the immune attack on the nervous system…***
- Plasma exchange (plasmapheresis) – The liquid portion of part of your blood (plasma) is removed and separated from your blood cells. The blood cells are then put back into your body, which manufactures more plasma to make up for what was removed. Plasmapheresis may work by ridding plasma of certain antibodies that contribute to the immune system’s attack on the peripheral nerves.
Normally going with the IVIG fluids is the first option since it simply involves laying there while you get a bag full of fluids pumped into you. Not painful, just a bit boring and uncomfortable to sit there for so long.
If that didn’t work then the blood transfusion would be the next option, but she was pretty confident in the IVIG treatment. Other than those two and staying on prednisone throughout the process, there are no known additional options. To that end, at this point there is no cure for GBS either.
That wasn’t easy to hear, let me tell ya! I’ve got a rare disease that is incurable, and my only hope is that this treatment works and at some point, I’ll eventually be able to walk and talk somewhat normally again. There’s a good chance that there will be long term, residual effects that could flare up or never full go away in the first place.
As she’s explaining all of this, my emotions were all over the place inside, but I was able to keep it together during our talk. I knew from past experience in trauma recovery and working with clients, that looking too far ahead and over thinking the situation was not the way to go. Doing that can quickly lead to an emotional melt down and panic.
I knew I had to focus on the here and now, be fully present, and take this process one day at a time. This was going to be marathon, not a race, and acting more like a turtle, than a rabbit, was going to be the way to approach this. Patience, Prayer, Understanding, and Self-Compassion.
So…after that lengthy conversation and plan seemingly in place, the rest of my week was going to be as follows:
January 10th, 11th, 12th, and 13th – Two bags of IVIG antibodies each day, and monitor vitals every hour during the treatments. Continued high dose of Prednisone, and a baby aspirin each day.
Other than that, it was a whole lot of laying around, watching TV, and trying to get up and walk now and then. I wasn’t able to read, or do much on my phone or tablet because the glare from the screen hurt my eyes and gave me headache, and the words in books were too hard to focus on with blurry, watery, eyes. I spent a lot time watching the Discovery Channel and Animal Planet. I steered clear of the news or any type of world events, as I wanted to stay as calm and relaxed as possible.
Plus I knew that they wouldn’t discharge me if my blood pressure didn’t come back down to normal. One of the side effects of IVIG treatments is HBP, and since mine was high already, I had to make sure it was at normal levels before they would discharge me that coming weekend.
Honestly, I was just relieved that all the tests were done, I had a firm diagnosis and a treatment plan in place. I didn’t want to spend a week in the hospital but if I did, at least I wasn’t in any more pain and there was some hope on the horizon.
My family continued to come visit the remainder of the week, and by Wednesday evening they took me off the heart monitors and off the cardiac diet I was on. This made life much more comfortable, and even though I was still unable to talk, still very weak, and not much had changed yet, I would find a way to make it through and get home.
As the week progressed, the treatments went off without a hitch. I was able to tolerate the IV drip at about 100, which meant that the time involved for each treatment was about 2 hours or so, rather than 3-4 hours at a slower rate. Fortunately, I had no other ill effects other than the HBP. I spent a lot of time that week alone with my thoughts, thinking about changes that needed to be made, and how things were going to be different from here on out. I spent a lot of time meditating, praying, reaching out to family for support, and realizing how lucky I was that this was caught as early as it had been.
As I mentioned before, had I not gotten that shot in urgent care, I may very well have ended up 10x worse and on ventilator, still unable to walk or care for myself. There are many GBS survivors who aren’t so fortunate, and have a much more difficult time than I have had…and mine was bad enough as it was.
Anyway…Saturday came and the last of my treatments were finally complete.
- 2 IVIG Bags just after midnight on Wednesday, and 2 more Wednesday afternoon.
- 2 on Thursday, Friday, and Saturday.
The weekend doctor wanted to keep me one more day just to make sure I was ok before discharging me for follow up with the neurologist. I was like, “oh come on Doc, you gotta get me outta here. I’m doing fine, I’ve tolerated the treatments ok, I’m going stir crazy in here.” Thankfully he agreed after looking over my charts for the week and they let me go home. I was able to walk out on my own…a bit unsteady and still very weak, but I walked out!
My middle son had been staying at my house all week, and thankfully he helped out a great deal by cleaning the house for me and taking care of the cats. Coming home to a clean, organized, house made such a difference. I was finally home.
It’s now been about a month since I was discharged and I’ve seen my neurologist for a follow up, and will see her again in a few more weeks. As of now:
- I still have no reflexes in my left leg or arm, and my left side in general is much weaker than my right. I am able to mostly function on my own though!
- I have to walk slow, and use railings on the stairs. I can’t lift anything heavy, and any type of physical exertion gets me tired and out of breath quickly.
- I use a handicap placard now, until my stamina returns.
- Driving at night is not easy, since the glare of lights is difficult.
- I need to wear a visor and use tinted eye glasses in order to focus on a screen of any kind.
- My ability to taste is finally starting, although most things still taste very bland. (the nerves were damaged in my tongue as well).
- I live on protein shakes, yogurt, pudding, soups, and things that I can generally chew and swallow with little effort. I am trying to eat some meats such as chicken, but it’s difficult since food still tends to want to fall out of the sides of my mouth.
- I am doing speech therapy twice a week and physical therapy twice a week, for the next few weeks to see how I respond.
- I’ve started to podcast again, as you can see from the recording I did (attached to this post), it’s a slow go and I’m not yet at the same schedule I was before, but I’ll get there. It’s difficult to talk for very long without getting a dry mouth and lips, and my face getting tired.
- I’m seeing clients again, which is awesome! I’m grateful for the opportunity to work with people who want to end anxiety’s control in their life and overcome their past trauma.
I say all of that not to look for sympathy, but rather to just give you an idea of how things are now vs how they were before, and the progress that is being made. I make sure to try and focus on the positives about this experience and my recovery. Some days it’s difficult, I am human after all 🙂
Usually those with GBS will make a full recovery within 6 months to a year, but in some cases, it can be much longer; years, decades even. It all depends on what variant of GBS you have, how early it’s caught, how you respond to treatment, and other factors.
I’m thankful for the support of family and those close to me during this time. I’m thankful for the GBS support group that I’ve joined, which is full of amazing survivors from all over the world who are fighting every day and encouraging one another.
I’m thankful to the creator who carried me through this life changing experience. I’m also grateful for the realization that I need to slow down and take better care of myself. I’ve been getting a lot more sleep, taking breaks when I need it, not trying to power through a project, and eating better too.
And hey, I’ve lost about 20 lbs. so far…not an ideal way to go about losing weight but I’ll take it. Any positive thing I can take away is good with me. ?
Life for me now is not the normal that it was just before Christmas 2017, and I may never be able to do everything I did before, or at the pace I did it before, but I’m adjusting slowly. However this plays out, I know all of this happened for a reason.
I don’t fully know what that reason is yet, but this experience has taught a lot about myself. Its caused me to do a lot of self-reflection and make some much-needed changes. The value and importance of those who are closest to you can not be diminished, and the old saying of not taking life for granted really has hit home for me in ways I could never have imagined.
I hope that my story has encouraged you in some way. If you or someone you know has experienced GBS, CIDP, or any other auto-immune disease, I would love to hear from you. Please contact me using form on my site, and share some of your experience.
-Matthew Pappas, Certified Life Coach
Blogger – Podcaster – Author – and GBS Survivor.
This post is for informational purposes only. It is not intended to be a substitute for professional medical advice or treatment, or mental health counseling.