As some of you may remember, I had a flare up of GBS symptoms back in October, where my body shut down and seemed to be mimicking a GBS attack. I was dealing with intense fatigue, weakness, nerve pain, brain fog, and anxiety, that was so severe I ended up spending a day at the hospital with a neurologist getting tested for Guillain Barre Syndrome again. My symptoms didn’t progress (which ruled out GBS) so I was sent home, but my symptoms stayed quite severe, and in the end, I was taken off work and spent a week at home mostly bed ridden. With complete mental and physical rest, (and a lot of B12 injections) my symptoms slowly faded, and I’ve been feeling really great ever since.
Because of my doctor’s lack of experience with GBS patients, I asked to be referred to a neurologist that specializes in Guillain- Barre, to discuss what they thought was going on with my body. (The last time I saw a neurologist was 6 years ago, as I’ve had such a good recovery and no concerns that my regular doctor hasn’t been able to handle.) My doctor didn’t see the point of me seeing a neurologist since I was feeling better now, but I pushed for the referral because I wanted a specialist’s opinion. I not only wanted to see if they had any insight as to what had happened to me, I also wanted to share my experience and show neurologists that even though some of us appear to have completely recovered – and even though the initial attack of GBS is behind us – we can still have issues, even 7 years later. My doctor did end up referring me, but unfortunately, because I hadn’t seen a neurologist for so long and because my symptoms weren’t severe anymore, it took 5 months for me to get in to see her.
I finally got in for the neurologist appointment last week, and she immediately booked me in for an EMG, a test that evaluates the electrical activity in my nerves. It tests how fast and how well my nerves send signals, and is one of the ways that doctors make a GBS diagnosis. Yes, I made a full recovery and am stronger than ever before, but she wanted to see what was going on on the inside of my body and see if my nerves have now recovered since GBS – if they haven’t it may explain my flare up. Her interest in doing the test made me extremely glad that I advocated for myself to talk to a neurologist – as I could tell that she is genuinely interested in GBS and what my results would be.
I was very nervous for the EMG, as the last time I had one was in ICU and it was extremely painful – to the point where I was crying and screaming, and almost fainted from the pain. I have would compared the process to getting electrocuted; they basically shock your nerves to check the response. Today, being back in a hospital setting wearing those awful blue gowns that barely cover your bum, and the strong antiseptic smell of iodoform lingering in the halls, definitely brought back a lot of bad memories.
But it didn’t end up being that bad at all, probably because I’m not in the acute phase of GBS like last time, when I was so hyper sensitive that even gentle touches would have me screaming in pain. This time wasn’t like that; it just felt like when you accidently shock someone with your finger, only over and over again, and a bit stronger each time. The whole process took less than 15 minutes. And then, thankfully, the neurologist discussed the results with me immediately after.
So the bad news is, that there is significant damage to my nerves. Other than the one nerve in my wrists, every other nerve in my arms and legs have delayed responses. Some nerves are more damaged than others, with the most damage being at the bottoms of my legs. And even though I’ve regained function and am even stronger now than before, my nerves and axons are still damaged. And what’s really interesting is that this EMG test results are worse than the one back in ICU, meaning that I had significant damage occur after that.
What’s really crazy is that she said if I had been given an EMG test back in October when I was having those severe symptoms, they would have likely admitted me immediately and began treatment for GBS/CIDP. Because my nerve activity still appears as if I have GBS.
However, I clearly don’t. I’m healthy, feeling fantastic, stronger than ever, and am having VERY minimal fatigue/nerve pain these days. In fact this is probably the best I’ve felt since having GBS. The damage is likely just the permanent damage that’s left over and this is my new normal; my new baseline. My body is just no longer the same, and the EMG shows that.
My neurologist wasn’t able to really say what could have triggered my flare up back in October – it could have been something as simple as a cold or stress that triggered my nerves to react and stop working properly – causing fatigue, nerve pain, brain fog, etc. But the good news is that I now have an actual neurologist again, so if I ever have a flare up of symptoms again, I’ll be able to get in to see her for another EMG right away. The test results may not be any different, but maybe they will, and then they can compare the results. And if my symptoms are that serious again, they would even consider giving me an IVIG treatment,
Finding out that your nerves are more severely damaged than anticipated doesn’t seem like something I should be happy about, but I am. There is now supporting medical evidence as to why my body is not the same anymore. There a reason for the nerve pain, the fatigue and the brain fog.
And the best part is that I will also be going to see her for these tests annually now, to see if and how things change over time. It will be interesting to see if the damage will ever improve or if it will always stay the same.
Either way, the results really don’t mean that much to me – I will ALWAYS base my recovery on how I feel, NOT what the test results say (with the test results I have I should be hospitalized right now, and in the meantime I went to the gym today and crushed an intense hour and half leg workout just as good as someone without GBS!!) But I am happy to be seeing a neurologist again that is able to study me over time and hopefully she and others will learn even more about Guillain-Barre !! If I am able to create some conversations and bring awareness within the medical field, than even better.
If you had GBS in the past, it may be worth asking for an EMG, no matter how many years it’s been. Just to see what’s going on now in your nerves. It may not mean anything to you, but it could help doctors to understand more about what happens to our bodies post GBS. So many people do recover and move forward with their lives and don’t see a neurologist again, so they have no idea that we actually still have issues this many years later. We may be recovered, but we are certainly not the same as we were before GBS.