Sarah’s story with facial palsy started in July 2016 although it would be another two and a half years before she finally received a diagnosis of Melkersson-Rosenthal syndrome in February 2019.
I was just a normal healthy woman in her 30’s juggling a full-time job and having three children. I worked long hours and had quite a stressful job, but I enjoyed that.
Then towards the end of June 2016 I started to feel unwell and was experiencing severe pains in my head and face, tingling sensations in my head, dizziness and just a general feeling of being unwell. I was told initially that I was suffering from migraines and was prescribed medication. I was also advised to book an eye test at the optician. I booked the eye test for a few days later on a Saturday morning.
When I woke up on the morning of the eye test something didn’t feel quite right with my face. I went to the mirror and realised that there was some drooping on the right side of my face and I was unable to smile.
I went along to the optician and by the time I got there the facial palsy was becoming more apparent. The optician told me that she thought I had Bell’s palsy, this was the first time I had ever heard of the condition but wasn’t going to be the last! She put my mind at ease and told me to see my GP on Monday morning.
I called my GP on the Monday and he confirmed that he thought I was suffering with Bell’s palsy and prescribed me some steroid medication and antivirals. I took the medications and within about 3/4 weeks my face had gone back to normal and I hoped that would be the end of it.
Then in November 2016 I woke up one morning with that same sensation of tingling and numbness on the right side of my face and sure enough when I checked the facial palsy was back. So back to the doctors, and again treated with steroids and antivirals, and then within a couple of weeks everything went back to normal.
Life continued as normal again until February 2017. I remember I was out shopping with my husband and I started to get the tingling sensations, I asked him if my face was ok and from the look on his face I knew the answer! We went straight home, and I suddenly felt exhausted so I decided to go for a lay down and when I woke a few hours later the right side of my face was completely paralysed.
I couldn’t believe this was happening again! I went back to my GP and she was concerned that there was more going on than Bell’s palsy, so she referred me to a neurologist at the local hospital.
However, over the next few days I became very unwell. I was so dizzy I could barely stand up, my legs felt weak and achy and I could hardly even get up off the sofa, the sharp pains in my head and face were back too, after a few days like this I called the GP back and I was advised to go to A&E.
When I was examined in A&E I was told that my facial palsy was not Bell’s palsy as it only affected the bottom half of my face and not my eye. So because of this and my other symptoms I was sent for a CT scan and reviewed by the stroke team. Thankfully the scan ruled out a stroke and a follow up was arranged with the neurologist.
I saw the neurologist a few weeks later and was told I was suffering from migraine and Bell’s palsy. I decided to get a second opinion and saw another neurologist. After a thorough examination this neurologist said I did not have Bell’s palsy and that he was suspecting something along the lines of Lyme disease or Multiple Sclerosis. Over the next few weeks I had MRI scans, blood tests and a lumbar puncture. All the results came back normal and after that my neurologist didn’t seem to know what else to do.
By now it was summer 2017 and the palsy that started in February had still not resolved like the previous episodes and I no longer felt like my old self. I was always tired, my body could no longer keep up with the activities it used to. Some days I would wake up feeling like I had already run a marathon and my leg muscles constantly twitched and spasmed, I would become dizzy suddenly for no reason. I developed trigeminal neuralgia in both sides of my face. I started to come out in hives, rashes that would last just a few hours and then settle. I lost over 10kg in weight over the next year.
I just wanted to know what was happening to me.
I left my stressful full-time job as I could no longer manage the long hours and took a part time job that allowed me to have a day off during the week as well.
I no longer liked going out socially and was very self-conscious of my appearance. When I looked in the mirror it was no longer the ‘old’ me looking back.
But more than anything I hated not being able to smile. It’s just one of those things you do without even thinking about it, you walk past someone you recognise and you give them a smile to be polite instead I would find myself looking down at the floor hoping people wouldn’t see me.
Despite my palsy never fully recovering after the February episode it did eventually improve a little. However I experienced further episodes in October 2017, Jan 2018, April 2018, May 2018, Aug 2018, October 2018. It got to the point where the palsy would just start to improve and then a few days later a new episode would start all over again. I was having more and more flare ups
Over the course of that year I saw various doctors from the stroke team, ENT, maxillofacial and the neurologist along with countless trips back and forwards to the GP. No-one could understand what was causing the recurrent facial palsy and other symptoms. Each time I had the same examinations; smile and show us your teeth – which I could only do on the left side, frown – which I could do no problem, wrinkle your forehead, close your eyes tight. I could manage them fine bit I couldn’t smile not even a tiny movement.
In August 2018 after some research I asked my neurologist to refer me to a facial nerve clinic in London. I saw an ENT surgeon who suggested a nerve decompression surgery. However, he wanted me to see a colleague of his first who was also a neurologist due to the palsy only affecting the lower half of my face as this would indicate a problem in the brain yet all previous scans showed my brain was normal.
I was scheduled in for the surgery in November 2018 and an appointment with the neurologist arranged for a couple of weeks before that.
Then in October 2018 when yet another episode of facial palsy started, after a few days something felt different. The left side of my face, which had never been affected before, started to droop as well and then over the next few hours my bottom lip swelled up.
I saw the neurologist in London a couple of weeks after these new symptoms had appeared, things were starting to settle but the swelling and palsy were still quite apparent.
The neurologist decided that more tests were needed, but at a time when I was having a new relapse of my symptoms. So the plan was when my symptoms next flared up I was to call the hospital in London for an urgent admission.
It wasn’t long before this happened and in January 2019 I was admitted and underwent numerous tests MRI scans, Pet scan, lumbar puncture, neurophysiology and more blood tests than I can remember! My blood tests showed a raised serum ACE and the scans showed inflammation within my lips. The neurophysiology showed that there was a block between my facial nerve and the muscle due to the inflammation in my face.
The neurologist came to see me and confirmed that these results along with the presentation of my symptoms which now included facial palsy, swollen lips and a fissured tongue was confirmation that I have Melkersson-Rosenthal syndrome. I was also told that it is possible that I may have Crohns disease and am awaiting more tests for this. Sarcoidosis has also been mentioned as it can be associated with MRS and I developed asthma only five years ago although so far they have not found any evidence that I have this.
I have now just started on medication and am researching the cinnamon and benzoate free diet which has been trialled in patients with this condition. It’s quite challenging as it’s not just foods you need to consider but also toiletries and cosmetics and so far I’ve found that most seem to contain benzoate.
The decompression surgery has been put on hold for now to see what happens. It is hoped that once the inflammation settles I will regain the movement in my face.
I’m relieved to finally know what is causing this although it is something I have to accept and live with. The person looking back at me in the mirror isn’t the same person it once was but I am starting to come to terms with that and to slowly build my confidence back up.
Disclaimer: Please note that views expressed are person’s own and should not be considered a recommendation of particular medical treatments, therapies or surgeries. We would always advise you seek advice from a health professional with experience in facial palsy who can assess your individual needs.
Last reviewed: 01-03-2019 || Next review due: 01-03-2022