Hey all,
I have recently been diagnosed with MS. I am writing this post to share my journey so far and hopefully help anyone who is in a similar position.. and to also vent lol
I am in my 30’s. No previous health issues. No prior warning signs before diagnosis.
One morning i was at work and felt “off”. It was very difficult to describe at the time. I felt sensitive to light, a sense of imbalance and just “off” in general so i left work at lunch thinking i will be okay the next day. I took my blood pressure at home that afternoon thinking maybe it’s low. It was normal. I was then thinking it could be small crystals dislodged in my inner ear throwing off my sense of balance but i wasn’t sure what would have caused it or maybe it was low iron. I contacted my GP that afternoon for a medical certificate and they referred for some bloods as my iron has previously been low. I did an eye test that weekend. It was normal. Fast forward to Monday i saw my GP in person for another medical certificate as i was still unwell and also asked for an MRI brain (I didn’t think anything would show but just to be safe). I was lucky enough to get an MRI appointment a few days later. During the MRI appointment i saw two radiographers looking at my scans (thinking maybe they saw something or they’re just chatting as it’s basically night time). After the scan was completed i asked the radiographer when results would be ready and she said in a few days so in my head i was like okay i should be fine because if its anything urgent its usually same day or the next day for results. I wasn’t going to look at the patient portal images online but something in my body was telling me to look so i did (and i guess the curiosity of working in radiology added to it). I started to cry seeing abnormalities in my brain (white areas that weren’t the same on both sides of my brain - again no idea what i was looking at as i’m not a radiographer or a radiologist) and of course i started to “doctor google” (I know i shouldn’t have and i don’t recommend this). The next morning i received a call from my GP telling me they want to discuss my results in person (I was already crying at this stage knowing it was not good news). At the appointment my GP advised it could be MS but he doesn’t know for sure and that i need to see a neurologist and have further imaging. He made a booking for me to see a neurologist the following week (which was very quick). He said he was glad i pushed for the MRI as he wasn’t going to refer for it (very important to listen to your body and advocate for yourself sometimes). I was also feeling a little worse leading up to this date with nausea and difficulty interpreting numbers which was really odd (for example i would misinterpret trading hours and become confused). I was also scared to drive as i felt my reactions were slightly delayed and i was still very sensitive to light so i avoided it where possible. I then received a call on the Monday from the specialist office (day before the appointment) that their neurologist doesn’t treat MS patients but i can still see them as a “once off” but i thought it seems like a waste of time and $700 so i cancelled it. I felt disappointed. So i started to google MS neurologists.. thankfully my partner who was doing research on MS treatments found a MS clinic that looked pretty good so I sent the details to my GP who organised an urgent appointment the next day - same date as my original specialist appointment (very lucky). I went to the specialist appointment and walked out very glad that my partner found this clinic. The neurologist spent an hour with me running through neuro tests, talking me through my MRI results and advising me on the next steps.. i needed to have an MRI brain, orbits and spinal cord with contrast as without the contrast it was difficult to know for sure but she seemed very positive so that put me at ease. I also needed a special OTC eye test. She said on the current scans i only meet 1/5 criteria for MS. She advised if the new scans are the same then i will do a lumbar puncture. She also gave me a script for a 3 day course of high dose corticosteroids in the meantime to help with inflammation and my symptoms. My symptoms improved about 3-4 days after stopping the corticosteroids so i was feeling better (85 % better i would say). I then had the MRI recommended by the specialist completed 5 days after finishing the corticosteroids and the radiologist report was basically the same - lesions in my brain appeared similar in size compared to the first scan and nothing in my spinal cord (I read the report before the neurologist appointment - naughty i know but again i was very curious if the corticosteroids reduced the size of the inflammation or not) so i thought maybe it’s not MS and i was mentally prepared to have the lumbar puncture and get second opinions. I then had the neurologist appointment 5 days after the second MRI and thats where the neurologist diagnosed me with MS. She asked how my symptoms were and i said much better compared to a few weeks ago and then she blurted out “You have MS” and i was in shock.. slightly confused.. sad.. and started to have tears running down my face. I wasn’t ready to hear it. She explained that with the new scans there is enough evidence to diagnose me with MS (my symptoms, dissemination in time and space and typical locations of lesions seen with MS in my brain). She said without the contrast it was too difficult to know for sure and the MRI slices were thinner so more detailed compared to the first scan. She seemed very positive about the outlook of MS and how most people live a very normal life and there are lots of good treatment options. This made me feel more positive about it but still very emotional. Thinking back to the appointment now and how she told me i have MS was actually good instead of saying “sorry you have MS”.. it was more of a positive way to break bad news.. anyways those are my thoughts. She recommended 3 treatment options (Tysabri, Ocrevus and Kesimpta). How does one pick a treatment?? It seems so overwhelming. I’ve had all week to research and weigh up the pros and cons to all three and still not 100% sure. I have a specialist appointment this afternoon and have prepared questions to ask which will hopefully make my decision easier.
It’s been one interesting month to say the least.. I’ve learnt it’s important to listen to your body and advocate for yourself, find a good MS clinic/MS neurologist, have a good support system, feel the emotions and make your own decisions regarding treatment. I find reading reddit threads helpful too. I am super grateful to have a very supportive partner and access to a great healthcare system with lots of good resources. Hope this helps someone out there in a similar position.
**Update after specialist appointment
Specialist appointment was good. I feel like we have a good plan for treatment. I will start with Tysabri even if i’m JCV positive for 6 months and then switch to either Ocrevus or Kesimpta. The reason for Tysabri is because i have a large tumerfactive lesion on my brain and it will work much faster compared to the other options. It will start working within a few weeks compared to months (she said it can be up to 3 months for full effect with other options). She hopes it will get much smaller and no relapse of symptoms. She said they discussed my case with other neurologists and they all agreed on the same treatment for me. She also only wants to do 6 months as they don’t keep patients who are JCV positive for more than 2 years on it. She said if i’m positive it will be something they can use again if they need to in the future. New baseline scans in 3 months time.