Keep Finding My Way Just to Lose It All Over Again
I had my first symptom of blurry vision in the right eye back in later 2013/early 2014, when I was still living in the UK and in my final year of University. I remember that nothing looked the same, and just using my eyes would make me feel sick to my stomach. Not knowing what it was, I tried my best to keep myself together. I looked for the cause for months going to several doctors eventually getting diagnosed with anxiety disorder and told to go for groups. My symptoms went with time but I now understand that anxiety may have been a symptom not the cause. It was the first time I attempted to complete university but MS got in my way. I don't even know if I could having been diagnosed 3 years later, contact my university and explain the circumstances of what had actually happened and why I actually couldn't complete my final few months. This left me with a huge loan on my head a degree equivalent to an Associates in Computer Science.
Sent to an ophthalmologist
Fast forward a year and I moved to New York to live with my parents I once again have the blurry vision in the right eye. I go to two more doctors who could not determine the cause either. I am sent to an ophthalmologist who increases my glasses' strength. I give up and the symptoms once again go in 5 or 6 months. During this period I am both working full time and going to community college full time in hopes that I could study game design and development.
My feet started to go numb
In February 2017 a particularly low point for me after getting laid off from my job due to a merger but having figuring out that I would move to Colorado to attend RMCAD. I was out shoveling snow when my feet started to become numb. I thought it was just due to the cold so I went in and tried to warm them up, but nothing I did would truly keep them warm for long. After a few days I got worried and went to see my family physician. She suspected MS but had not told me at the time, and sent me to her husband who is a neurologist. Our insurance at the time was not the best so I had to wait about a month till I could go and do the MRI and spinal tap that was requested.
The MRI showed lesions
Once I changed insurance I went for the MRI for my brain with contrast and a spinal tap shortly after. The spinal tap came out negative for any conditions but the MRI showed lesions in the Corpus Callosum section of my brain. My neurologist however gave me no real feedback or diagnose me with anything, just ask me for an MRI of the C spine and T spine. This was an issue for me and my parents at the time due to the cost but knew it was necessary. The C spine MRI showed further lesions but from getting frustrated with my current neurologist, I chose to get a second opinion. During this period the numbness had spread up to my mid torso and I was having spasticity issues in both legs.
Diagnosed with RRMS
The new neurologist I had gone to see, upon learning that I had planned to move to Colorado in two weeks to study Game Design, decided it was not worth treating me but told me it was most likely multiple sclerosis. In the next few days, my stiffness got so painful and uncontrollable I could not even walk. I had to go to the hospital and wheeled in, in a wheelchair. They contacted the new neurologist who told the ER it was MS and I was sent home with Baclofen. A few or so weeks later, I was all set to move to Colorado and positive not to let MS stand in my way of achieving my career goals. Now I recall that as being so naive and unrealistic. My parents and I were motivated to see a neurologist before they went back to NY. He finally on April 21st, 2017, diagnosed me with relapse-remitting multiple sclerosis. Although it was terrible news, it was just good to put a name to everything going on. We spoke about starting an immune modulating drug called Tecfidera.
Impossible to keep up with school deadlines
I started college having spoken to the disability office, and making sure that everyone that needed to know about my condition and the difficulties I faced did. I soon discovered however meeting Art deadlines and having MS don't go together. Especially as I was so newly diagnosed I didn't even know what I was dealing with. I was constantly fatigued even after sleeping a full night and by this point the numbness and spasticity had moved to my upper torso and my arms. It made it impossible for me to keep up. I was always behind and soon had to face the real decision of giving it up and figuring out my next steps.
Even before moving to Colorado, I was certain that cannabis would help my condition and to no surprise, I found out it was. My pain would be so much better after smoking cannabis flower and concentrates. I could even walk much easier. I came to rely on it constantly. Due to this and my condition, I knew it would be difficult to find a job in most places. Lucky for me I was in Colorado where there are more cannabis shops than Starbucks. One day picking up my medical stock from the dispensary, I put in my resume. I was very quickly called for an interview and given the budtender job. Life was pretty stable for the next 5 to 6 months until my manager seemed to forget my limitations, and just continuously change my weekly schedules. After holding them steady for all this time. The stress and inability to keep up a schedule put me into continuous relapses making it impossible to often go into work.
The stress and financial pressure put me into a severe relapse
As a response to this, my manager cuts my part-time hours of 3 full days a week and one-half day to just one full day and a half-day. The news broke me. I had just got a new car to help me get around a bit easier. This would mean that I would no longer be able to afford to pay for it, or even my rent for that matter. Although I was offered a part-time job as a trimmer my right pinky finger had gotten twisted in a severe relapse making it to painful a job to do. I called my dad with tears in my eyes but there was nothing that could be done and we both knew this. The stress sent me into another severe relapse, so I chose to just send an email to my boss that I was unwell and not to hold it against me that I was not at work. She tried calling but as I would not pick up she left me a threatening voicemail. At which point I called and she told me that she will take me not attending work as me quitting, which was probably for the best. I relaxed for a month but the financial pressure was mounting so I got my car registered with Uber and Lyft.
Switched from Tecfidera to Ocrevus
About 6 months had passed since starting the Tecfidera and I was still getting new or worsening symptoms. After another MRI we could see the Tecfidera was not helping so we quickly moved to Ocrevus. I slowly started to work the hours I could, however learned that I could not work enough to pay all my bills. At which point my parents started playing a more continuous role in helping me financially. The pressure in a year or so would get too much for them so I moved back to NY in Feb 2019. At this point I was in active talks with North Western Hospital about being in their stage 3 testing for HSCT (Hematopoietic stem cell transplantation).
Accepted for HSCT testing
Luckily for me I was accepted and things from there moved very quickly I was in Chicago for testing by late February and back for the study by March and successfully completing it by April 23rd. It was not an easy process but I'm glad I got a chance to do it. It involved getting 1 round of Chemo and waiting for my stem cell count top go up. Once it did I had a PIC put in my neck to extract the stem cells. Due to me being very skinny and the PIC placement not being positioned in the best place, it was a very painful 7 hour period. A week later I was called back to be checked into the hospital for 3 more rounds of chemo and after my clean stem cells would be reinfused. I was in the hospital locked away for just over 3 weeks. The process changed me a lot from my taste buds to my symptoms, haha. I have spent the past year recovering and once again figuring out my next steps. I was very hopeful that the therapy would give me my life back and it felt like that for some time, however, I still have most of my symptoms and the lesions still seems to continuously overwhelm me. Sleep has always been an issue but since having MS it feels like I have not had a proper night's sleep and it got no better with the therapy. I still have 2 more years of healing time remaining, but I'm left asking why I went through the therapy at all if I'm not all that much better. Although I fully understand it was just to stop the progression not reverse symptoms.
Trying to stay positive about the future
Generally the few things I would say I'm most passionate about are, the environment, animals, equality for every human to live a safe and peaceful life. I currently have a business idea and am trying my best to stay positive and get things done. With the current COVID crisis it is all holding in the balance getting me frustrated for what my future holds. Especially as I am often still struggling with my symptoms and my head often feels like it has holes in it. If I'm successful though, I know how big of an impact it could have for everyone around me and even the environment. It could hopefully mean that people of all walks of life can get clothing that is great for them/ their skin and great for the environment. I would use this platform to encourage MS and general chronic illness education.
Relationships have become much more difficult
If I was to give advice to someone newly diagnosed, it would be to make sure you have strong relationships to help support you. Due to me and my mum continuously moving when I was younger. I never really built those friends and relationships, so did not really have anyone to help with my emotional burden. As the illness is so invisible I often struggled to even have the people closest to me believe what I was saying. That still goes till this day. I still can't really speak to anyone around me as it's just taken as negativity or selfishness. I do attend therapy and this helps to a degree, however it's really hard to get out weeks or years or issues in 45 mins every 2 weeks. Relationships I would say have become much more difficult. Dating for me has been next to impossible but I don't think it should not be ignored. Hopefully someone out there understands even if they are that one in a 100,000 or a million. Make sure to exercise I tend to increase my chances of having a good day if I exercise the day before. I tend to do weight training to bulk up and hopefully be a bit stronger if the illness causes any more issues.
I thought I would post my story here to get it out in the open and hopefully meet new friends and acquaintances along the way. Thank you for reading and if I can provide any help, or answer some questions I would be more than happy.
How many specialists did you see before finding "The One"?