6 years ago, October 22nd, I was officially diagnosed with Relapsing Remitting Multiple Sclerosis. Before my diagnosis weird and slightly alarming things had been happening so I called my PCP for an appointment and when asked for what, I said a full body MRI because my body is a cluster fuck. I was then advised they’d leaving the swearing bits out of the note.
My physical was “not normal” so I was sent for an MRI. With all the memories I have lost because of lesions and atrophy I remember the call like it was yesterday. My husband and I were going into the house from the garage where we used to live when she called. The MRI came back showing lesions- I asked what that meant – it could just be from your history of migraines or it could be MS so I recommend you go see this neurologist. – MS?- multiple sclerosis but it could be from your migraines. – At this point I started crying, the only thing I knew about MS were the commercials I saw as a kid where a mom woke up one morning and couldn’t use her legs, another person went blind. First of all WTF were people thinking when they put this shit on the air? That commercial and the one where Bugs Bunny tells you to turn your pot handles away from the edge and move cords so your child doesn’t get burned or something worse (that’s on YouTube if you don’t know what I’m talking about because apparently it was not aired where my husband grew up).
I have always been a person that needs research, documentation and as much information I can get my hands onto. My pregnancy and child rearing library I purchased when I was TRYING to get pregnant was intense, we weren’t even pregnant yet!
I had a 4 inch binder full of information, research papers, dietary recommendations, questions to ask your doctor, types of MS and all treatment options by the time I had the meeting with the doctor and she said it’s definitely MS. I was confused, while I definitely did not want a lumbar puncture test I read it must be done and she was telling me it’s for sure without it. When I asked she said clinical diagnosis can happen without lumbar puncture if you have more than 5 active lesions; since I had more than 20 there was no need. What a weird, bitter sweet moment, being told your life will never actually be the same again, but also you don’t need to do the test you were terrified of having to do.
Since 2014 I had 4 good weeks of remission, 2 months before my one year anniversary of diagnosis. Then I was rear ended in a very bad car accident and it’s been a slow, downhill progression since. It was a hard road to learning to be my own health advocate when my first neurologist refused to change my medication even though I was getting new lesions. She refused to listen to my concerns or treat me with respect.
In the middle of 2016 I fired my neuro and got a new one. It was not immediate to be listened to or feel like they understood my concerns were valid, I won’t lie. I started a bullet journal to keep track of my symptoms daily, temperature, activities. On one of my follow ups I showed them and said “is THIS normal?” The answer was no, and then I was taken seriously, because here’s the thing, you go in and you won’t remember everything in the last 6 months because your brain is damaged by MS, you’ll say your exhausted or in pain or choking and they’ll do their little tests and send you on your way. Here, now in front of them they had 6 months worth of data (I like data remember, and I needed them to understand) and they reviewed the data. That appointment was over an hour of going through all my logged information, checking to see if any of my meds could be an issue and trying to figure out how we could make my quality of life better. We ran out of time before she could do her little checks.
6 years in, I am on my 4th medication and my neurologist has noted so far in the 2 appointments in 2020 that I am progressing, there are ebook relapse without new lesions and I’m moving into Secondary Progressive MS. I don’t think my medical notes would ever match what I know my body is doing if I hadn’t documented everything. I still make notes to discuss at my appointments, less intimidating ones now. Things I’ll easily forget like how many falls I’ve had and such.
So here I am, not yet 40, hearing loss in both ears from Ménière’s and moving into SPMS more quickly than “the average MS patients of my age”. I’m such an over achiever. I have know since at least 2017 that I was secondary progressive, I could feel my body sliding slowly downwards and I knew it would happen eventually I just wanted the validation from my doctors that it was accurate.
I have my brace and balance service dog, a cane and a walker… the cane and walker make me feel like an old lady to the outside world. While Oak is invaluable to me and all of my MS issues, he draws a lot of attention and the first question out of everyone’s mouth that doesn’t know me is “oh is he in training?” He has signs all over “Service Dog” “working please don’t touch” the numerous questions that come after “no, he’s mine” are exhausting and some are quite intrusive. There are days I just want to say, “would you be asking me all of these questions if I was in a wheelchair?” But I don’t, mostly because I don’t need the extra stress of conflict when people get upset you don’t want to answer their questions but also because I represent Freedom Service Dogs when I am out and that is the foremost thought on my mind when people start asking questions you would never think to ask a person who didn’t have a service dog.
Six years of MS looks a lot different than the told me it would. “Some people never get to secondary progressive”, “you can work and lead a normal life with these medications”. Turns out, the medications didn’t work and I am NOT your typical MS patient, and that probably has something to do with the fact that I had it for a while prior to being diagnosed and also being on a medication for 2 years that wasn’t working.
I can no longer work, I can’t walk very far, stand for very long, sit in one post for very long or multitask. I get confused easily, overwhelmed frequently, forget A LOT and am generally not the person I was even two years ago. My previous hobbies cause pain, chronic pain and chronic fatigue make me very cranky and have a short fuse.
I often wonder why I got such shitty MS when I know people that have “more normal” lives. What’s the difference? No one knows, everyone’s MS looks different they say. I wish mine looked different, I wish I had more than 4 good weeks of remission in the last 6 years. This is what I have though so this poses for those of us that think we’re alone in the severity of our disease and feel like we got the short stick or can’t understand why. You’re not alone.