I first got symptoms when I was around 9, with my first instance of numbness on my feet. It started to spread throughout the years up my leg and even to my face. Doctors couldn't diagnose it, since it came in short periods of time they ruled it as stress induced. I also have always gotten migraines and dizziness. I can't count the amount of doctors I saw growing up, often saying I was just trying to get out of school and I was faking my symptoms. At 16 I got such a bad migraine that I was out of school and work for about two months. It wouldn't go away no matter what they tried. They did an MRI and found "spots" on my scans that they ruled as migraine spots. Fast forwards to March of 2017, I had just started a new job at a hospital which has always been my dream to work at a hospital and I started getting numbness in my feet. I thought maybe 12 hour shifts take a while to get used to my feet are just tired. The numbness then started spreading up and over the next four days reached my hips. I usually ignore this symptom since I've had it for so long but this time it reached my pelvis and my ankle was rolling and dragging. After a 12 hour shift I went to the doctors, who sent me to the ER for an MRI (the previous year i was sent to the ER for numbness as well as was told it was nothing) then admitted to the hospital and 36 hours awake later with no food (due to the spinal tap they made me do) I got told I have MS. Suddenly everything made sense. All the fatigue, the headaches, the dizziness, the speech issues I had a year previously, everything.
I just felt an overwhelming bout of anger. I had been going to doctor after doctor since I was 9. I'm pretty sure it was caught because I went in during MS awareness month. My family took it the hardest at first. As I lay there with a Solumedrol treatment. My main concern was going back to work. A week in the hospital then back at the ER for the Spinal Headache I got from the lumbar puncture.....where again the doctors didn't believe the pain I was in. Two weeks later the first neurologist I saw put me on more solumedrol. 5 days this time for new symptoms, Lhermittes sign. One week after that my pulse dropped to 40 then to 29 for two days. two days later it spiked to 190, with me barely being able to walk without fainting from the rapid heart rate. This is the moment I realize I cannot be on Solumedrol.
The most stressful time for me was probably finding a suitable neurologist. The one i was referred to barely made time to see me, her nurse treated me like I was an imbecile, and they both knocked down my concerns for the course of treatment they wanted me on, the one option they were giving me was a clinical trial. I am studying and have been studying to be a doctor. I do not go into any treatment with thorough research and what I found I did not like.
That started my search for the right neurologist. I found an MS doctor, who was nation wide known, who has MS himself. This was the one. Unfortunately my insurance said no. So while I waited for an appeal I went to see another one, a PA two cities away from where I live. When I got there, he came in and asked who sent me, apparently he wasn't accepting new patients as he was switching practices but then named off the doctor I was trying to get into seeing. I then exclaimed, that's who I'm fighting to get in to see!! Without a second thought the PA pulled out his phone and called the doctor personally. Within the next month I got into see the neurologist I wanted. The PA is probably the first person to restore my faith in the medical field for a long time. Even though he wasn't accepting patients he still saw me for a full hour, explaining everything and answering my questions. He worked under the neurologist who is now my current doctor, and I couldnt be happier. He shares my beliefs and outlook on this disease almost exactly, opting out of solumedrol and not supporting sticking patients in clinical trials. He treated me like I was an intelligent human being and not just a test subject.
While I haven't had it for long. I can already feel how this illness has changed me. Not just symptoms but a weird new sense of the world and what is important. I'm still learning. As well as I still feel like I'm in the acceptance stage and some days are better than others. I'm hoping and optimistic about the future and the breakthroughs they are already making with this illness.