My journey with #MyastheniaGravis
Growing up I was a healthy, happy child. I never had any of the usual childhood ailments mumps, chicken pox, measles etc just didn’t come, & in fact I never even had the flu. At the end of 2003 when I was 15, I felt my cheeks becoming “numb”& put it down to extreme exhaustion & stress of exams & an upcoming move. Over the next 2 months things got progressively worse very quickly, & soon I was battling to speak, swallow, lift up my arms; & walk any distance. I had no energy & slept majority of the day. My mum took me to our local GP who initially said he thought it was an #eatingdisorder, & then #GlobusHystericus another psychological condition.
I was referred to an amazing psychologist who saw that this was something more, & was so patient with me as I slurred my way through our sessions. I would often hear my mum crying on the phone at night time to our relatives saying that she didn’t know what was wrong, & she didn’t know how to help me. I didn’t understand what was happening to my body & started withdrawing more & more as time went by.
At the beginning of 2004 we managed to get in with one of the top neurologists in
South Africa. She performed a few muscles strength tests & got the history of the
past few months. Within 15 minutes she gave us her diagnosis Myasthenia Gravis.
Myasthenia Gravis is a neuromuscular autoimmune disease where the message between my nerves & muscles gets blocked (by my own body) so pretty much my body attacks itself, & even if I want to perform certain movements/tasks;
my body wouldn’t allow it. I was admitted into hospital immediately & sent for countless blood tests, an MRI, CT scan & so many other tests that my head was spinning! At this stage I was only managing a quarter of a jar of babyfood a day as I simply couldn’t swallow; so in order for them to give me my medicine they had to crush it in 5ml of water & syringe this into my mouth this took over 3 hours to get the full dosage in. When I cannot swallow, it doesn’t matter if it is my saliva, a cooldrink or food nothing will go down.
I felt a huge difference & for the first time in over 3 months I managed to get some
food down. I was put onto immune suppressants immediately, along with cortisone &
Mestinon. In the March of 2004 they performed a Thymectomy –with this they have to cut through my sternum & remove my Thymus gland. This should atrophy with age, but mine had grown little“arms”& spread out across my chest cavity (which is comm
on with Myasthenics). This has been proven to cure some people with MG, but unfortunately 2 days after being released from hospital, I was admitted back into
High Care for observation with muscles weakness. Since then I have undergone countless treatments–from different immune suppressants, chemotherapy, cortisone, polygam & plasmapheresis (a process whereby a CVP line is inserted into my heart, & my blood is spun through a“washing machine” where the red & white blood cells are separated & my sick white blood cells are replaced with donor plasma).
In 2011 I ended up with septacemia after the surgeons nicked my bowel during removal of ovarian cysts. I was very sick & had an abscess covering almost half of my upper body. Due to my lowered immunity & muscle weakness, I developed pneumonia & started drowning within myself – I flatlined a couple of times & had to be placed on a ventilator & in a medically induced coma whilst my body recovered & I could strengthen. It was terrifying. I woke up with tubes down my throat, unable to speak & having no idea what had happened. Luckily I had an amazing medical team who worked tirelessly to get me healthy & strong again. I was in a form of remission for 2 years–my MG was under control on the medication that I was taking & I was able to live a normal life.
I went to gym, got married & could make the most of everything that came my way. It was wonderful! We then decided that we wanted to try for children, so I was taken off some of the medicine (this can cause major birth defects & was not a risk that we were willing to take) & went for all the check-ups etc. Due to my years of medication, my reproductive system had been badly affected & we were told IVF was our only option. I worked on getting healthy & strong for over a year, going for acupuncture &
taking all my necessary vitamins & we then went for our first IVF. We were told we didn’t have time on our side as my body is not strong, & my hormones are all very low, along with very few eggs. This was a scary thought, but we didn’t want to give up.
We were so excited when we found out that our first run with IVF had worked! Our
hearts were full & we were excited for the future. Unfortunately, we lost the baby at 10 weeks. Once I had recovered from this & got a bit stronger, we tried another round but this time we weren’t so lucky. Funnily enough, the extra hormones seem to keep my MG under control & I felt super strong & happy during this time! My body took a huge emotional strain from this loss; & together with stress from my job; general life & having been off immune suppressants for 2 years; I began to relapse. This time it was scary as I declined so very quickly & had no idea what to do. My husband & I were moving to another province, with him moving here 2 months before me.
I moved in with my family & every day I could feel myself battling more & more. There were days I went without eating as I couldn’t chew or swallow; I often couldn’t bath myself; doing up buttons on clothing was near impossible; talking was a chore & sounded extremely slurred; I climbed under my desk at the office during my lunch break to take a nap; & I was constantly exhausted. I was put back onto all sorts of medication in order to try boost me again, but nothing seemed to work or last. We moved to our new province & I immediately made an appointment to go see a new neurologist, who told me that my MG had now developed into Refractory Myasthenia Gravis –meaning it no longer responds to treatment. We were terrified.
I was extremely weak at this time; unable to even get off the floor without assistance & I was sleeping up to 18 hours in a day. Talking was just way too much effort, & often people couldn’t understand what I was trying to say. I was making smoothies to try get some nutrients in & line my stomach for the tablets, but often I would choke on these & my husband often had to pull food out of my throat when it wouldn’t go down or come back up. I had a Hickman Line inserted to allow me to go for more regular plasmapheresis treatments –this has always worked well for me & often forms as a little “boost”during the year. The most I had previously was 1 every 6 months just to top me up & keep me going. I was now told that I would need to be admitted into High Care at hospital for 5 days at a time every 6 weeks, & we would try it for 6 months to see how I responded.
I was put onto a new immune suppressant to see if that would make any difference (they need to suppress my immune system in order to prevent it fighting itself); & began my new treatment regime. I am very lucky that my job is so supportive & I am able to work from home/hospital when need be; as there was a time that the added financial stress just made my symptoms worse. At the end of last year we tried the last possible drug in South Africa, which has had great effects on so many other Myasthenics–in fact putting many into remission! It is hard on your body & it completely destroyed my immune system at the same time. And the hardest part of this? The fact that it didn’t work for me…All the heartache, the belief & the pain.
I have cried many tears over this! At the beginning of this year I was admitted for an open lung biopsy where it was discovered that I had developed PCP Pneumonia, & had come close to death. I was just lucky that my doctor was on the ball & didn’t just brush off my concerns. Since then we have been trying to find a combination of drugs that could help me, but my liver & kidneys are also taking strain so we have to be careful not to overdose & damage them further. I have had my perm cath reinserted, as well as a port. I go in for plasmapheresis this weekend, & then start chemotherapy as soon as medical aid approves it –hopefully this will be our little magic mixture! Along with the mestinon, prednisone, ciclosporin, etc etc. Myasthenia Gravis is different for each & every patient, & I have come to realize that I can’t compare myself to others in any way. And what treatment works for one may not work for anyone else! It’s a tricky situation for our doctors, as well as for our family to try properly understand the battle we are fighting. But together, we can get through this!