The Road to diagnosis
It was a cold, dark February morning in 2005 and once again, my eye and facial pain was back. The antibiotics my old GP gave me the week before did not work at all, and he seemed clueless about what could be wrong with me. In the few weeks before trying out another round of antibiotics, I had seen a dentist, went to the Eye & Ear Clinic and I had seen a homeopath, yet nobody was able to give me a clear answer. The only person somewhat clear on what was wrong with me, said that I needed to have my immune and central nervous system checked out. Fast. She was an intuitive healer, and turned out to be 100% correct.
On my way to work that morning, just before driving past our local hospital, I decided I had to do something about the continuous pain that had been troubling me for the last four or five months. If my GP was not going to be proactive, at least I would, so I got off the bus and walked towards the hospital, wondering if I was either going stir crazy or if I was doing the right thing.
In the back of my mind, I knew what was happening to me was not like anything I had ever felt before on a physical level. That made me scared about my near future because things at work were hectic and I wanted to climb the ladder within the company, hoping to become a team leader. Things went well at work and I was having the time of my life – in between bouts of frightening pain of course. Eight years later and in hindsight, getting off that bus that Monday morning and checking into hospital was probably the best decision I ever made. I just did not want to be sick again, and I refused to give in, but I knew I needed looking after and the only place to do that was in an emergency department.
I felt guilty though. Nine months before, I had surgery to remove endometriosis from my abdomen, and now I was on my way to hospital again. Four months after having surgery, and five months before checking into A&E, I started having inexplicable symptoms. Walking from my bed to my bathroom or from the couch to the kitchen felt as if I just ran a marathon. It was like climbing a mountain backwards… very difficult to do and upon arrival, I just did not have any energy left to return to where I came from. I showered sitting down because my legs could not support my body anymore. Aches and pains in my left side, especially my face and eye, was 100 times worse than having my wisdom teeth pulled and stabbing pain interrupted my daily life because I yelped each time it happened. Later I found out that trigeminal pain is also called the ‘suicide disease’ because it makes you want to commit torture. And torture it was.
Pain is relative and hindsight a beautiful thing because it teaches you to be strong… the severe tiredness and other symptoms to the left side of my body were much worse than my endometriosis ever was. Now that I felt what trigeminal pain was like, endometriosis was lowered to a 6/10 when the facial and eye pain was a definite 10/10. I would even go as far as 11/10.
After checking into A&E that Monday morning, things went fairly quickly. X-rays were taken of my skull, just in case the facial pain was related to bone fractures. When they came back clear, I was sent for a CAT scan. That came back unclear so I was told I would need to be checked in for a few days so other tests could be done. Vascular tests and another round of X-rays and an MRI scan were added to the list.
Four days later one of the consultants came to see me, carrying my increasingly bigger medical file. He said “I have to apologise to you, because I thought you were just-another-Monday-morning-I-don’t-want-to-go-to-work person.” Hearing this told me that something was wrong. He said it was not good news, and that I would have to stay strong because “The MRI scan told him there was a very high probability of having MS.” Gulp…
Shortly after he returned with five medical students and he asked them to look at my face. One of them said “the left side” and I had no idea what he meant. I was also asked to stick out my tongue to see which way my tongue pointed. After they left, I rushed to the bathroom and checked my face. Shock… The left side of my face was not as thick as the right side. When I put my hands on my cheeks, I felt the difference in volume, and that difference is still there today. There was loss of muscle texture and I started crying, but at last I knew that the pains were real and not imagined. At least I was in the right place, at the right time.
Pain being relative, if I thought that the facial pain could not be more severe – it would be lowered to a 9/10 because I needed a lumbar puncture to have a definitive diagnosis. A spinal tap can cause severe and maddening headaches, so I was at the receiving end of what was pure hell. The first attempt of tapping spinal fluid was unsuccessful because my consultant had never performed one on a live patient before – lucky me! – so I had to stay in hospital before they could attempt a second one. This time it did work, and I was singing ‘Beautiful Day’ by U2 during the harvesting of spinal fluid. My mobile phone rang and my ringtone was rocking out that song and I thought about staying positive and keeping my spirits up. I needed to stay strong, not just for myself but also for my family and friends. My consultant said he had never heard of anyone singing during a lumbar puncture before and that he would always remember me now, but the singing was only short-lived. I had to lie down for 6 hours to help settle the spinal fluid again, but woe me… massive headache! I felt like my head was stuck in a vice while someone was banging on top of my head while my face was being squeezed to mushy peas. And it just went on. And on. And on.
Friends came to see me in hospital but they could not do anything to help or soothe me. The noise drove me stir crazy and I begged the nurses for a room all to myself so I could sleep. They found one quickly enough but sadly, the headache would not go away, and sleep seemed something from the past. Nurses kept prodding and poking my arm for blood pressure reasons and for re-adjusting my IV drip in the middle of the night, so anarchy started welling up in me. I just needed to sleep so badly and I begged and cried to let me go home to my own bed. They allowed me to leave hospital on my own account and so I did 3 days later, overjoyed to be going back to my own big bed and quiet bedroom and house. I knew I was taking a risk leaving before the headache had settled down, but I was on the verge of total anarchy and in so much pain, I was becoming a liability to myself.
By then it turned out that my employer urgently needed my sick notes but I could not go to my GP with pain like this, as walking made the headaches worse. I went over anyway and begged one of my colleagues to please come to my house so I could give my sick notes to him. On the way home I needed to sit down every so many minutes to let the pain settle about 10%. When my colleague came to my house that evening, I asked him why I deserved this kind of pain, that I never hurt anyone so why me? I felt like dying right there and then. So let me assure you, trigeminal pain may be called the ‘suicide disease’, but lumbar puncture syndrome pains are even worse. I never want to have one again. Ever. And I would strongly advise people not to have one unless they absolutely have to.
And then, there it was… MS. Multiple sclerosis. “People die of MS, right? I will be in a wheelchair by the time I turn 33, won’t I? I will be severely disabled for sure…” Thoughts like these kept flying through my mind. Back at home, and finally clear of headaches after suffering for 13 days of lumbar puncture syndrome, I could finally sit up again without having to vomit. My spinal fluid had settled and I could walk around again, so off I went to the library to lend books on MS. Back at home, the internet became a tool of doom because some websites talk about all the hardships of having a degenerative, neurological illness while other sites gave fantastic info for newly diagnosed people. Not that I was interested in the good stories though, I was looking for the bad ones which told me how to prevent further disability, because “I was disabled now, wasn’t I?”
I was lucky in the sense that my road to being diagnosed was fairly short, and for that, I will forever be grateful to myself for being proactive in getting myself checked into the Accidents & Emergency department. The nursing staff still remembers me from my later C. Difficile superbug stint, and even though I can’t remember their names or their faces… their actions I’ll always remember because they went above and beyond what nursing staff should do. Living angels… no better words for them, they are simply living angels.
Last April I had my eighth ‘anniversary’ of being diagnosed. It has been a huge learning curve, one that is still being tested today. I fail, but I try again. I still have dreams because I want to live. I rise and I fall but I always want to get back up. I loved and lost, and continue to sacrifice, because I need to.
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How many specialists did you see before finding "The One"?