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 pure torment 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.

This week I have 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.

© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2013. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner are strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.

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Quirky, tenacious and neurologically compromised female expat living in Ireland since 2002 ◾ IRELAND BLOG AWARDS WINNER - BEST BLOG POST 2018 with '3443 Needles' ◾ Ireland Blog Awards Finalist 2014, 2015, 2017 ◾ MyTherapyApp Best MS Blog for Simplicity 2018 ◾ Everyday Health Top 10 MS Blog of 2018 ◾ Feedspot Top 50 MS Blog 2017, 2018 ◾ Contributor to the Teva MS blog Life Effects ◾ Contributor to the Novartis MS blog Living Like You ◾ Contributor to MS Ireland’s blog MS & Me ◾ Contributor to The Mighty ◾ Guest contributor to ◾ WEGO Health Patient Leader Award Nominee 2018

7 thoughts on “The road to diagnosis

  1. My LP headache lasted 2 weeks! I had to return to work halfway through, I had to go to the bathroom and lay down on the floor every time it got unbearable. It gives me shudders to remember it.

  2. I am undiagnosed but some parts of your sto are familiar to me. Especially the LP headache! I couldn’t even sit up for 4 days after mine. Had to be horizontal.

    I have never had severe pain but I lost some parts of my near-central vision during my first ‘episode’, which never returned. I may not be starting another episode 11 months later and now terrified that I’ll lose more of my eyesight. I’ve never been treated because my MRI and LP didn’t show anything unusual.

    How do you deal with work commitments? We have an inspection on Tuesday but that is the day that the opthalmologist has said he can see me as a semi ‘casualty’ type case because of my worries about this returning. But if I ask for a different day, he will think that it can’t be as bad as I say.

    1. I’m so sorry to hear about this and I hope you can find out very soon what is wrong with you. It’s very frustrating not knowing and it can play serious tricks on your mind. Definitely speaking from experience!

      LPs are absolutely my worst enemy. Had to keep horizontal for almost 2 weeks and every time I got up or sat up I had to vomit. Lost an amazing 8kg in that time frame. I’ll never forget having to sit down on the ground in the supermarket, crying of pain and frustration. Used to be so active, and having to lie down that long turned me into a little monster :)

      From what I read on your blog you’ve had tests done to find out. MS can be very hard to diagnose; I know of people who went from doctor to doctor for over 10 years, being misdiagnosed, not having any medication for their symptoms and so on. In that case I was very lucky in the sense that my diagnosis came quickly but only because I stepped into Emergency and asked them what was wrong with me, because I felt like I was just imagining symptoms. Going to A&E meant that they couldn’t turn me away and that they had to get me tested and that they had to use a differential diagnosis (elimination processing).

      I just wondered if you’ve tried homeopathy and perhaps go the holistic way? My homeopath gave me vitamins I was clearly lacking and he referred me to a medical intuitive healer? I know it sounds like quack but if they’re real, then you could be amazed at their abilities. Only after I was diagnosed I realised that the woman I had my intuitive session with was spot on. First she talked about my endo problems and then she told me that I needed my immunity and central nervous system checked out because the problem was located there. She sat about 1 metre away from me, eyes closed and “scanned” me that way. She felt my illness and afterwards I was so impressed by it. It may not be a official way to go but it could lead you to the right doctors if the intuitive sees/feels where your issue is located.

      Committing to work is not easy and if anything it will give you lots of headaches. The most important thing is that you feel OK with what you’re telling your employer: will you inform them of your illness or won’t you? In my case I thought it best to include them, let them know that I was unwell and that I was trying to get it sorted out. They were really good to me and eventually I was allowed to work from home. When my eyes and fatigue were getting too much, I tried deciding what to do: quit work or not. Eventually the decision was made for me by my medical staff and that was it… retired since the end of 2009 now and now I can finally look after my health. I can sleep when I feel I need to; go to the doctor when I need to without having to be a liability to work and colleagues and so on. Of course each person deals with it their own way but I’ve come to realise that you only have one body, and you need to look after yourself because no one else will do it for you.

      Is there no way you can skip your inspection so you can go to see your eye doc? Otherwise explain him that you really need to be at work but that you also really need to have your eyes checked out. Hopefully they will understand your situation and I do hope for you to find out soon what ails you.

      Rest as much as you can but don’t let things worry you too much either. Stress is never good.

      Take care!

      1. Thanks for your reply. You were very unlucky with your LP aftermath.. I feel lucky now to only have suffered for 4 days. Although having said that, I also caught an infection with it I think because the day after I had it, I couldn’t keep anything down and my temp was sky high! I think that scared the docs lol.

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