MY DIAGNOSIS STORY, PART I
Multiple Sclerosis, Clinically Isolated Syndrome or Complex Chronic Migraine?
You may have heard that multiple sclerosis affects everyone differently and when you add that into the complexity of diagnosing neurological disorders and diseases, the diagnostic process can become very confusing and downright stressful for the patient. My diagnosis story is still continuing and is extremely complex but I wanted to take the time to share it with you because if I had been able to find more information on Clinically Isolated Syndrome MS then I feel the process could have been less stressful for me. Most of the information you do read about CIS MS is that it’s fleeting, you are supposed to have one episode of symptoms that resolve and that is a classic presentation of CIS. However it is not always that straight forward and I am living proof of that, I know I am not the only one. Here is my story.
It began in September 2016. We had just moved out of our first family house and were staying with my in-laws temporarily until our interstate move that we had planned for January 2017. It started over a few weeks of getting some headaches, I just put them down to drinking too much coffee to finish my work deadlines. At first the headaches were mild, just enough to cause irritation. Then they began to become more of a problem and I started taking some painkillers. I was just writing them off as not drinking enough water and all the normal causes. Until finally, I was working one day and by about lunch time the pain was becoming more intense. I decided to leave early, I picked the kids up and headed home. I remember driving and every noise my kids made was like someone was stabbing me in the brain. I also remember driving and thinking I don’t even know if I should be driving. By the time I made it home, only a half an hour drive mind you, I had tears rolling down my face from the pain. I stumbled through the door with the kids, then headed straight to take some painkillers and lay down. Luckily my husband was home early from work and he immediately called the doctor. I remember saying to him, it’s fine I’ll just take something for it. He describes this whole scenario as me falling through the door like I had been shot. And that was the start of the full blown, debilitating chronic migraines that I suffered for nearly 10 months straight. We are talking 3-4 migraines per week, most of which lasted 2 days so pretty much a constant of migraine or on a good day, bad headache. Once my husband arrived with me at the doctors, they immediately ordered me an MRI for the next day. At this stage, I simply just thought I was having bad headaches and they were doing the MRI to rule out anything sinister. Secretly I was terrified though, my father died from a brain tumour. Even though they aren’t hereditary, it was still a terrifying prospect. So the next day, I went in for my MRI.
There is something about the very first time in that tube that is completely overwhelming but honestly this first one, I think I was kind of numb. I don’t remember thinking anything was actually wrong but more that this was one of those routine rule-it-out type scenarios, maybe it was just denial. It wasn’t until I got a call from the doctor after hours and they asked me to come down right away. I knew something was wrong but I just had no idea what. “Several T2/FLAIR hyper intense foci within the deep white matter of both cerebral hemispheres have a periventricular distribution with at least one juxta cortical lesion in the right frontal lobe and two periventricular lesions (right peritrigonal and left occipital region), suspicious for demyelination. No diffusion restriction to suggest the presence of active plaque or recent ischaemic event. Further imaging of the cervical and thoracic cord recommended to assess for further plaques.” The doctor explained that the most common cause of demyelination is MS. To be honest, I don’t really remember what he said after that. I think that’s the shock part kicking in. What I do remember is this one big white spot, there was other smaller ones but the one big one was what worried me.
When I got home, my husband asked what the doctor said and I just burst into tears. I couldn’t even say it at first. There was a lot of tears that night, I tried to stay composed but I just couldn’t. I was terrified, mostly because of the uncertainty I think. I remember trying to get it together to call my Mum and as soon as I heard her voice, I pretty much blurred out “lesions on the brain” to which she had a meltdown and we had to call each other back once we calmed down. I do remember at first we thought of lesions like little masses or tumours which is why my Mum didn’t cope at all. Boy, did I google the hell out everything in that report. Everyone says you’re not supposed to google with these types of things but for me, information is power. I wasn’t trying to diagnose myself but I was trying to understand what they were looking for. Understanding the diagnosis process was helpful to make the whole thing a little less scary. Definitely working out that the lesions were not little tumours was a big relief.
I was sent for a C-Spine MRI the next day. I was scared now. I had a nasty migraine this time. The whirring and banging was absolutely agony and every time I shut my eyes, I would get the most intense vertigo which meant that I had to keep my eyes open this time. I don’t know if you’ve ever had an MRI before, but for me the key to surviving them is shutting my eyes and trying to pretend I’m somewhere else. So having to keep my eyes open for this one when I was already feeling scared and sick was not ideal at all. By the time I came out, I got intense vertigo when I sat up and it took me awhile to be ready to leave. This MRI was done late on a Friday afternoon, we then got to wait three days before we could get the report on Monday afternoon. My C-Spine results were clear. While this was amazing news, it also made everything very confusing because now it became a case of “Is it Multiple Sclerosis?” I was then referred to a neurologist. I was absolutely terrified about what was going on with my body, I could feel the changes. When I say that, I’m not just talking about the symptoms - it was bigger than that. My entire body just felt different, like I just wasn’t myself anymore. All I know is I wanted to get to the bottom of it, I needed answers. So I booked in with a private neurologist rather than waiting for one in the public system. I began writing everything down, every little thing I noticed going on. The list got pretty huge pretty fast. I was getting severe headaches daily and the fatigue was starting to really kick in.
About five days before my neurologist appointment, I got what I would describe as really severe restless legs one night. It was like a tingling and burning sensation, my legs were so unsettled that I couldn’t sleep. Little did I know, that feeling wasn’t going to go away. I woke up the next morning with pins and needles through both of my legs. I also started to experience some numbness in my lips. Later this day, I was driving and was in a situation where I needed to use breaks relatively fast. It was almost like my foot had a tremor, like I told my foot to put the break on and it didn’t respond. Luckily at the last second it did and I was okay. I remember driving straight to the doctor and being completely freaked out. The doctor didn’t really understand what I was saying and to be honest, I think he thought I was overreacting. I also told him about the leg pain the night before and the continuing pins and needles which still hadn’t gone away. I remember him telling me that it doesn’t necessarily mean anything unless they don’t go away. I walked out of the doctors office and just cried from frustration. I knew something was going on but it was so incredibly difficult to explain it all. I actually felt crazy. The next day I woke up and the tingling had moved to my left arm and was still in both of my legs. I also started to experience some tingling across my head, muscle twitches and I started to notice I was becoming quite clumsy.
It was time for my neurologist appointment. My sister in-law came with me to my appointment. I am so glad that she did. I highly recommend taking someone close with you to your first appointment. It’s such a huge amount of information to take in. The main thing I remember from the appointment is that all that feeling crazy went away. The neurologist took me seriously. She went through all the notes I had been taking and she understood when I was trying to explain the weird things that were happening. From the outset, she was convinced it was MS but explained that there wasn’t “enough” on my brain to confirm that it was MS. She basically explained that we would need to wait for more to happen on my MRI to confirm it but based on my symptoms and my neurological exam, she believed we were dealing with MS.
“The key requirement for a diagnosis of MS is evidence of damage to the central nervous system that is disseminated in time and space. This means showing that damage has occurred at different dates (DIT) and to different parts (DIS) of the central nervous system. This distinguishes MS from other neurological conditions.”
Read more about diagnosing MS at https://www.mstrust.org.uk/understanding-ms/diagnosing-ms
So at this stage, I don’t fit the McDonald Criteria for MS as I have only one attack (the current one they are seeing me for) and I only have damage to one part of my central nervous system. Now it’s really a matter of ruling out all other possible conditions and waiting for another attack to show up on the MRI. She scheduled another MRI and a massive amount of blood tests to help in ruling out other circumstances. The bloods included liver enzyme tests, rheumatoid factor, C3 & C4, ANA, CRP, ESR, ENA, dsDNA, ANCA, TFT, Folate, B12, TPO antibodies, Varicella Zoster & Vitamin D. She also explained that we could do a lumbar puncture but they can be really nasty especially for people with migraines and my age so she only wanted to do that if it was totally necessary.
Over the next week after my appointment, I started experiencing some new symptoms including extreme heaviness in my legs, full blown fatigue (couldn’t stay awake) and brain fog. The tingling had moved into my face, across the top of my head and through both arms. I started to get crawling sensation across my legs to the point where I would have the check I didn’t have bugs on me. I would get this really strange sensation where I would get shivers on the left side of my body only, literally could draw a line down the middle of my body and the shivers were only on one side. My vision would get quite blurred at times and I started to experience pain behind my eyes. I also started to get what I would call tightness in my chest and sharp stabbing pains in between my shoulder blades but I now know that it was the MS hug because I still get it regularly. I started to get more physical symptoms such as feeling weak, shakiness and feeling stiff when walking. I started to get stomach issues such as cramping, bloating and diarrhea which was definitely from the copious amounts of pain killers I was taking but when I tried to just take panadol, it didn’t even touch the sides.
About ten days after my appointment, I had my follow up MRI of both brain and c-spine which was about a month after my first MRI’s. My follow up appointment with the neurologist was about two weeks after the MRIs. The MRI had some minor changes but not enough to reach a diagnosis. The neurologist conducted a nerve function test which was clear and meant I didn’t have peripheral neuropathy causing the nerve issues. She commenced me on Endep to try and get my migraines under control and a migraine plan of attack. Take x and x for mild headaches and so forth. She also gave me scripts for migraine meds and a stomach protector to take alongside the nurofen. We decided to go ahead with the Lumbar Puncture in hopes that it might have some answers.
As I was seeing a private neurologist, I had to organise my Lumbar Puncture as an outpatient with the private hospital. It was done in an X-ray room and was done by guided X-ray but that still didn’t help. This was the most painful experience. Many people talk about not feeling anything when they have a Lumbar Puncture done and I was hoping for that outcome. The doctor doing my procedure, struggled to get enough fluid and had to move the needle several times. Every time the needle was moved, I had the most intense and painful electric shocks from my spine down to my toes. It was absolute agony. Then I was kept for two hours laying flat which they do to avoid you getting a post Lumbar Puncture headache. I felt a bit dizzy but mostly okay when we left. But within about two hours of getting home, I started experiencing literally the worst headache of my life. The only way I could alleviate the pain was to be laying down.
“Spinal headaches are caused by leakage of spinal fluid through a puncture hole in the tough membrane (dura mater) that surrounds the spinal cord. This leakage decreases the pressure exerted by the spinal fluid on the brain and spinal cord, which leads to a headache.”
We went straight to the hospital, where I ended up staying for about 5 days. There was discussion of a blood patch but it was decided that the risk of making it worse was too high. I did make a fully recovery without intervention but it took about 7 days before I could sit upright again but once I could then it resolved very fast. When conducting a Lumbar Puncture for MS diagnosis, medical professionals are looking for oligoclonal bands (which is an indication of inflammation) in the spinal fluid and compare them to bands in your blood. If there are different bands in your spinal fluid and your blood then you may have multiple sclerosis.
I had a follow up appointment with my neurologist a few days after this so she could check up on me after the LP complications and also give me my results. The end result of my Lumbar Puncture was that there was a significant amount of blood in the sample and it wasn’t conclusive enough for a diagnosis. However given the severity of my symptoms, they were getting worse everyday and the appearance of my MRI lesions. My neurologist decided to start treatment for multiple sclerosis, she explained that she was 90% sure it was MS but just didn’t have the clinical findings to fully prove it yet. At this stage, it would be Clinically Isolated Syndrome Multiple Sclerosis, at least until a second attack happened. She wanted to start the safest of the MS treatments, Copaxone because it doesn’t suppress the immune system and therefore wouldn’t cause significant problems if it turned out to be another condition causing my symptoms.
Chronic Migraine & Headaches
Pins & Needles - in different areas of my body at different times
Altered Sensations such as crawling, shivering and feeling like you have water running down your legs
MS Hug - like a band of tightness around chest and I also experience stabbing pain between the shoulders when I get the MS hug
Nerve Pain - Shooting pains in my arms & legs
Muscle Twitches & Stiffness
Tinnitus (Ringing in the ears)
I started Copaxone and then around two weeks later, the tremor in my hands started. Alongside the tremor, I became significantly more clumsy too. For such subtle symptoms, it actually terrified me. Something about this affecting my hands really scared me as to what the disease is capable of. I remember feeling crazy like I was overreacting but I knew something wasn’t right so I kept taking my notes for my neurologist. The hand tremor continued for a few days and the nerve pain was becoming more severe despite the Endep prescription being increased, I was on 25mg at this stage. I called the neurologists office and went back for a follow up.
At this follow up she ordered another MRI, to try and “catch this” on the scan. Also I have had sensorineural hearing loss (damaged hairs on my cochlea) since birth but given the severity of the tinnitus alongside the other symptoms, my neurologist ordered a hearing test to check if any changes had happened to my hearing to help rule out other possible neurological conditions that could affect hearing too. My hearing test was all clear but something crazy happened during the test, while in the isolated room and listening for the specific sounds - they set off really intense vertigo and even the audiologist couldn’t explain it. The brain is such a fascinating thing and when it’s not working properly, some crazy things really start to happen. I went for this next MRI on the 22nd December, good timing eh? But to top it off, my family and I were all packed and ready for our interstate move right after Christmas. Being the impatient person that I am, I went back to the hospital where I had the scan and picked up the report the day after the scan!
“Five-six lesions within the brain in a typical location for demyelination which would be in keeping with Multiple Sclerosis. Probable one new lesion seen just in the left centrum semiovale region posteriorly, otherwise relatively stable appearance”
Merry Christmas, you’ve got Multiple Sclerosis.
The interstate move, the stress of the diagnosis and the heat of Australia summer (I think it was around 35-40 degrees at this time) really knocked me around. I ended up taking myself to hospital a few days after the move. They really didn’t take me very seriously at all and they attributed everything to heat and dehydration although IV fluids and stemitil they gave me did nothing. I felt extremely frustrated and helpless but I just assumed that this was life with MS and that you just had to deal with it. At this stage it was mostly headaches, the other symptoms seems to have calmed down a little. So I just pushed through, I took mountains and mountains of paracetamol and ibuprofen over that following month.
Then all the symptoms came back with a vengeance but the pain was worse, I had pain behind my eyes and the migraines and headaches were out of control. We are talking daily migraines, painkillers every four hours and completely not functioning. My balance was really off, my hand tremor was back, nerve pain, brain fog, muscles twitching and blurry vision. After a week of this pain, I had no choice but to go back to the hospital. They increased my Endep dose yet again, now I was on 50mg. I was also given a script of Endone to help me get through the pain until the new Endep dose kicked in. I had a follow up appointment with the MS clinic at the hospital a few days later and they scheduled an MRI Brain & C-Spine. Over the next three days, the pain kept intensifying. It got to a point that 6 paracetamol, 6 ibuprofen, 2 rizatriptan and 2 endone still didn’t take the pain away. After a very restless night of pain, I woke up with a blind spot in my left eye. So off to hospital I went again, at first the neurologist who examined me essentially said he wasn’t even sure if it was MS and I’m not if it was terrible bedside manner but he essentially blamed it all on stress around the diagnosis. I didn’t realise at the time how huge an impact stress can have on chronic illness so it really upset me to be made to feel crazy yet again. Despite all this, I was admitted for further testing.
The head neurologist ordered a whole battery of tests to essentially come up with his own diagnosis despite the report I had received. The first eye test confirmed that it wasn’t optic neuritis but that the blind spot was there. They took me off the Endone as the head neurologist said it would only be making my migraines worse and cause rebound headaches. I was still really unsteady on my feet, I could barely hobble from the bed to the bathroom. Over the next few days, they conducted some more complicated tests on my eyes, I lost count of the blood tests and they also gave me an MRI with contrast. The scan showed no changes from the scan in December. They summarised that the eye issues and the balance issues were caused by a flare up of my chronic migraines but not a flare of my multiple sclerosis. “I didn't realise that you could have a flare of chronic migraines that made MS symptoms worse but I'm really glad it wasn't a relapse and MS appears stable”. To be honest, my neurologists have been quite elusive about my diagnosis throughout the entire process and guess that is because multiple sclerosis diagnosing particularly in the early stages is extremely difficult. They explained to me that since my lesions are fairly minimal and that I commenced Copaxone so early in the diagnostic process which would ideally halt it’s progress but also halt further relapses and as such delay definite confirmation of the disease if it was working.
If you are going through a diagnosis at the moment, I hope my story has helped you. Multiple Sclerosis is such a tricky disease to diagnose, it presents itself in so many different ways and can be incredibly confusing to understand in the early days. I would love to hear your diagnosis story, please feel free to share in the comments below. If you’re struggling with getting a diagnosis, please feel free to reach out to me as I know how agonising the process can be. Please stay tuned on my Instagram as I will be sharing where I went from this stage of the diagnosis, how my symptoms progressed and what triggered me to begin my healing journey.
