MS started affecting my life June 2017 the first that I ever truly knew. I have no prior comparitive imaging to know the changes in my brain, spine, or body. I was on vacation with my family and my father found me in our hotel after I was having a seizure. Being 25 years old with no prior health issues aside from a few broken bones this was incredibly terrifying. I was taken to an ER, a CT scan amongst other bloodwork was ran. No major red flags were found so scared as ever, we continued our trip as the doctors allowed and followed up with a neurologist when we got back to our hometown.
The neurologist that was referred by my PCP was awful. He mad me feel as small as a grain of sand for being scared about what happened to me. He told me I didnt' look too happy when I was sitting there listening to everything he was saying because I was concerned for my health and wellbeing. Literally asked me "Do you want to be on seizure medication?" Um, of course I don't want to take medication, i'm completely healthy. But what do I NEED here guy?! Bedside manner was terrible, lets just say I left the office crying in my Mom's arm at 25 years old and said I was never going back to him. He ordered a brain MRI and an EEG, some more labs, and that was that, see you in six months. I completed the tests and had a notification from a "my chart" type of system. When I saw that I knew I shouldn't log on but I did. I read the words "demyelination" shown on my brain and immediately started to google doctor myself. I was convinced I had MS, or something wrong because that's all I could think of. So I called my PCP and told her about what I read, she was authorized to read the MRI imaging and told me to not be alarmed.
Okay, great... I guess? So I go on living my normal life and hear nothing from the neurologist. Fast forward three months later to the date of my first seizure and I am out of town once again to stand by a girlfriend as a bridesmaid in her wedding. We went to bed the night before and the next morning once again I was waking up with an EMT in my face. I had another seizure in a hotel room and was found by my friend. I was again scared to death and without my family this time, thankful my friends in the area could come by my side.
I was given seizure medication (Keppra) for the first time in my life after the ER physician got my workup from the prior incident. That's when I truly knew my life was going to be changing. I was fully convinced I had a seizure disorder or something when this happened again. But the way the two things happened in the same stressful incidents, many working days and traveling.. It just seemed so odd.
As I came home from my trip once again, scared to death... I followed up and made an appointment on my own with a different neurologist recommended by a family member who has a husband that sees the same one. The MINUTE he looked at my brain MRI and all of my workup I had compiled to bring to my first appointment he ordered an entire sheet of nloodwork labs, a spine MRI, a lumbar puncture, repeat EEG, and and ophthalmologist referral.
He told me he was concerned not about my EEG but my brain MRI which was considered abnormal with central nervous system demylinating disease (Oh thanks a lot prior neurologist... never got called about that one!) Seeing that on every piece of labwork order or paper shook me. He specifically mentioned MS. This is where my biggest challenges truly began when it came to entire vigorous month of testing to get finished before the New Year insurance changes. The day after my birthday I was consulting for a lumbar puncture that could be the "tell all" to everything. Terrified, I tried to continue on and on and keep a smile on. Caring for other people in my job I couldn't bring my baggage to the door with me. It was extremely tough.
12/7/17 was the day I was diagnosed with RRMS.
My neuro follow up was extremely emotional as I was "hoping for the best but expecting the worst" as they say. My BP was through the roof because I was so nervous and I just could not hardly relax. If there is one thing I am so thankful for is my new neurologist. The way he told me, he let me cry, he let me hug my Mom... he let me be a HUMAN, not an insurance ID in the chart.
As this is all new to me, it's extremely hard to deal with still at times and I hope it gets easier. I am so thankful for my support system. My hopes and dreams are that I can continue to live my life with no major issues as my neurologist told me my case is very mild. I feel like now that I have a diagnosis I can at least sleep at night without waking up and wondering why, or if I'm going to have another seizure because of a reason I dont know. Treating the issue is better than not, and thats what I am on the road to doing.
There are still many things to do and get regulated. I can still continue my life and that's what I am thankful for. Like my neurologist said, I can still live my life- I just need a little more monitoring now! Being someone that literally went to the doctor for a sinus infection maybe once a year prior to this incident, its definitely different. Being a healthy person that enjoys working out, eating healthy, and enjoying a little bad here and there in moderation... I just want to continue to better myself.
If I had something to say to someone new to MS I would tell them to hop right on board with me. I think the biggest relief has been that I am not alone and there are other people out there are like me. I could have had this for many years and just never sent myself into an exacerbation. I would tell them to seek out a support group in friends or family. If I was alone through the period of June-December and had no support I would not have made it. A quote that significantly touched me when I first found out was reading someone with MS saying "we are all like snowflakes, no two of us are alike" and thats so very true.
I hope that many strides can continually be made to make a world free of MS. Research and treatment seem to be getting us there and the more I read the more I learn. I hope that people can continue to live their normal lives here on out.
I can't wait to advocate for those with MS by contributing to the community, educating, doing walks runs or bikerides, etc. I want to make this positive rather than negative. I dont want to overthink every single littlle feeling I have now that I have been diagnosed. I am hoping to be able to connect with others using this site to talk about MS experiences.