The Back of My Mind

My Journey to a Diagnosis of Primary Progressive Multiple Sclerosis

The Back of My Mind was the title I gave the blog I began while trying to make sense of the symptoms that eventually led to my diagnosis of primary progressive multiple sclerosis. Today marks three years since that diagnosis.

Vague feelings of malaise were not new to me.  In my early teens I experienced a range of unexplained conditions that I went to great lengths to investigate which, more often than not, either disappeared as mysteriously as they started or formed part of a rotational menu of symptoms that generally appeared in times of stress or uncertainty in my life.

The first of these were what I now know to be panic attacks but in the mid-seventies no-one really talked about these rather alarming states of anxiety. Mine could be triggered by anything from watching a movie that I found disturbing to feelings of agoraphobia or generalised, health-related fears.

One of the accompanying physical aspects of these attacks was dizziness and I would often feel as though I were in danger of passing out. After consulting ear, nose and throat specialists I underwent exhaustive inner ear tests, hearing tests and I even had a brain scan. When the results came back normal, I did what a lot of people do and started on the alternative therapies. I changed my diet, did various exercises and eventually saw a dentist who diagnosed temporomandibular joint dysfunction (TMJ).  The diagnosis made sense. My jaw constantly clicked, my bite was out of alignment and I realised I was an enthusiastic teeth grinder. I was fitted with two plates – one that I wore at night-time and the other during the day which affected my speech to the extent that I was often asked if I’d had a stroke.

Unfortunately, there was no improvement in my symptoms which remained with me until the birth of my first child when the TMJ disappeared and was replaced with an odd sensation in my throat. It was as though I had a lump in my throat and was unable to swallow properly. Back came the panic attacks. It was something of a chicken and egg situation. I didn’t know whether the swallowing thing was because of the anxiety or vice versa? I’d had problems with tonsillitis in my teens after a bout of glandular fever and underwent more tests that all proved to be normal. I found that the condition had the rather manic-sounding name – globus hystericus (now known as globus pharyngeus). I found it hard to believe that this condition had its roots in stress and anxiety because it felt so incredibly physical, yet I have to admit that when I was swallowing actual food or drink, the sensation wasn’t so evident, particularly if I was swallowing red wine!

Mild psoriasis appeared and I dabbled in diet changes and ointments that may or may not have contributed to its eventual disappearance. Throughout this the dizziness came and went and eventually developed into Benign Paroxysmal Positional Vertigo (BPPV) which would sporadically occur when I was lying in bed and moved position in my sleep. When this happened I would awaken feeling as though the entire room was spinning like a merry-go-round and I would have to sit up and put my head between my knees until the spinning stopped. Sometimes I felt as though I might be sick but thankfully I learned how to do the Epley Manoeuvre which helped more than anything else I’d tried.

After that it evolved into shoulder problems followed by back and hip related issues until finally I was guided down a path that eventually led to my discovery of TMS. Dr John Sarno described a condition he called Tension Myositis Syndrome (TMS), proposing that unconscious emotional conflict could contribute to physical pain and other often mysterious symptoms.

I discovered TMS, which I’m going to call the Mindbody Syndrome, in 2013 when I was at my wits’ end with the leg weakness and corresponding tension in the muscles that were compensating for that weakness. He outlined all of the symptoms I had experienced throughout most of my life—the very symptoms I’d described above, and I totally recognised the personality traits he lists as being the most vulnerable to Mindbody ailments.  I followed his suggestions and fully believed in it, but unfortunately my problems didn’t improve and I ended up going against his advice and allowed myself to be seduced into the idea that if I underwent spinal surgery, I would be running, bush walking and possibly even skiing!

Nearly a year after my surgery I felt worse if anything and I fervently wished that I had followed Dr Sarno’s advice and not got my surgery hopes up so high.  I re-embraced the works of John Sarno and uncovered a lot of repressed anger that I had been only moderately aware of yet instead of improving, my symptoms almost immediately worsened. I became very fearful that I either had ALS or cancer. When I was eventually taken to hospital and diagnosed with primary progressive multiple sclerosis on 22 September 2016, I almost punched the air with relief!

I slowly improved almost to where I was prior to my hospital admission. Having said that I had what I thought might be an MS flare-up a couple of months ago but even my doctor and neurologist agreed it was more likely to be back related rather than due to MS. I was admitted to hospital and underwent numerous scans and it was thought to be a problem with my facet joint. I was given a cortisone injection, although by that time it had already started to improve of its own accord. When I looked back on what had taken place in my life in the month prior to the onset of pain I probably shouldn’t be surprised that I had experienced a Mindbody reaction to those events. Looking back, there hadn’t been one overwhelming crisis but a series of smaller events that had upset, saddened or angered me. Whether coincidence or not, it felt as though I had almost literally manifested The Back of My Mind.

Thankfully my back pain improved reasonably quickly after this latest blip, and everything is stabilising again. It might have been the injections or a change in my mindset, or maybe a combination of both.

Once I received my primary progressive multiple sclerosis diagnosis, all those other Mindbody symptoms—the panic attacks, TMJ, psoriasis and globus—completely disappeared- the panic attacks, TMJ, psoriasis, globus etc that I had had since my teens completely disappeared … along with my fear. The fear was far worse than the reality. Not only of the disease itself but I’m now not afraid to say, “I’m too tired to do this”, or to my physio “my body doesn’t want to do that”, or to confidently voice my concerns to health professionals etc. I recently read Gabor Maté’s excellent book When the Body Says No. It’s a great title! I know full well when my body is saying no and I know if I don’t act on it I will pay the price later.

Why the hell I didn’t I do it before I got the illness rather than stoically battling on and trying to be “perfect”? I personally believe there is a connection between the emotional stresses in my life and the way my illness developed. Whether or not that relationship is causal, becoming more aware of my own limits and emotional wellbeing has undoubtedly helped me live better with MS, and I hope it continues to support my stability.

It’s not necessary to get a bona fide auto-immune disease to set boundaries, attend to your own needs and honour yourself.  My latest experience has reinforced the importance of being vigilant lest those old habit-knit thought patterns creep back in.