Day: January 29, 2020

Well today I had some more knee pain during my physiotherapy session today which can slow down my recovery from Guillain Barre Syndrome. I noticed this when I went walking today between the parallel bars. It didn’t take me long before I started experiencing some pain in my knee. This happened yesterday as well.

The doctor yesterday said they were going to order an x-ray however after a physical examination today they canceled it. They are going to keep an eye on it going forward. An X-ray won’t show anything, an MRI is what will be needed if done.

During my physiotherapy session today after I experienced more pain the physiotherapist started treating my knee. She used ultrasound to do so. Going forward there won’t be any more walking between the parallel bars this week and she’s hoping that over the weekend might give my knee a rest.

My physiotherapist talked to the doctor and if my knee is still bothering me next week an MRI is going to be ordered. She’s also going to look at give me a brace for my left knee or taping it up to give it more support.

After standing up last week and supporting my own weight I’m not happy about my knee pain. I’ve been making some great progress and this could impact my recovery from Guillain Barre Syndrome by slowing it down. I’m supposed to be going forward. Hopefully my knee feels better next week. I definitely don’t want anything slowing down my progress.

Well today I was informed that I have Guillain Barre Syndrome AMSAN, a rare GBS variant, the most severe form. AMSAN, acute motor and sensory axonal neuropathy is a rare axonal variant of Guillain Barre Syndrome. I suspected this all along but the doctors never told me there was different variants of GBS until I did more research and discovered this on my own. When the doctor did his morning rounds I asked him what type or variant of GBS do I have. The doctor then confirmed with me that I have the most severe type of GBS.

Guillain Barre Syndrome AMSAN GBS Variant

AMSAN is considered the most severe form of GBS as the severe symptoms happen very quickly. This form of Guillain Barre causes severe weakness in all four limbs, basically completely paralyzing you in as little as 7 days. For me it basically happened in around 24 hrs. My breathing became so compromised that they had to put me in an induced coma along with mechanical ventilator. The risk of mortality with this form is high. I’m actually quite lucky to be alive thanks to the care provided by the doctors, nurses and respiratory therapists at the Dr. Georges L. Dumont Hospital in Moncton.

The Cause of Guillain Barre

There is little known research as to the cause of Guillain Barre but is suspected to occur following a gastrointestinal virus or infection. As for me I had diarrhea about 7 days before I became ill with GBS. It lasted for about 4 days, then 3 days later after it cleared up I was hit with Guillain Barre. Guillain Barre Syndrome is however known to brought on by the flu shot. Know the risk before getting one.

With me knowing that I do indeed have the most severe variant of GBS doesn’t change anything. I am going to continue to work hard and try to get better. On day 40 I was already told I wasn’t going to make a complete recovery by one neurologist. Others have seen me afterwords and based on my progress they don’t see a reason why I shouldn’t. When someone tells me I’m not going to achieve something, it makes me work that much harder. I’ve been making great progress I’m going to continue to do so. I know nothing is guaranteed in life however I need to have faith that I will recover from the worst variant of Guillain Barre Syndrome known as AMSAN. Only time will tell, till then it’s hard work and determination that will drive me forward.

GoFundMe Jamie Boyle Fight 
With Guillain Barre Syndrome – GBS

In Physiotherapy today they focused on my legs which included leg lifts and leg extension exercises. I’ve been going on the mat more lately to further work on the strengthening of my legs.

These are just some of the types of exercises they have me doing up here at The Stan Cassidy Rehabilitation Centre in Fredericton. I work on leg strengthening and muscular endurance on the SciFit bike as well as the mat exercises.

All of these exercices will therefore help me towards walking again. I also go between the parallel bars pretty much everyday now that my legs are getting stronger and improving. I was also able to stand up in the sling a few days ago supporting all my weight. I’m pretty happy with my progress.

One thing I noticed lately is my right leg is stronger then my left leg. My left leg is weaker. In the videos above as well as the photos slings are used to eliminate gravity. This also allows me to do the exercise as with gravity I can’t quite yet for some. My right leg I can do leg lifts and lower leg extensions without the sling. However on my left leg I can’t that much.

Hopefully with all the exercises I’m doing will help strengthen my legs further. Last week I noticed a little discomfort in my left knee. I’m hoping it’s nothing. Also I don’t need anything holding me back from my recovery from Guillain Barre Syndrome. Hoping it’s just nothing.