What led up to my MS Diagnosis and where I am now

5/28/20235 min read

I wish I had a huge dramatic story as to how long it took for me to get diagnosed but it was rather less than 6 months from my first major symptom. Apparently the random brain fogs I was getting and issues actually peeing was just random new things my body was going through because of aging (it was not). These symptoms started the beginning of 2021 and I didn't think much of it, somewhere late 2021... my sex drive disappeared and I thought it was odd but guessed it was because I just finished turning 34. It wasn't until February 14, 2022 did I go through numbness in my hands and feet, at first, I thought of it as odd and it'd go away pretty soon...pretty soon never came around. I went through 2 weeks of numbness in my hands and feet before deciding to get some sort of help. Within those two weeks I was going through what I now know as MS hugs. For some odd reason, I thought going to an urgent care was a good idea, they took some blood and ordered an ultrasound. I did the bloodwork and the ultrasound test, nothing unusual found in my blood tests, they found a gallstone (which got removed later that year) through the ultrasound. He had no clue so recommended I go to my primary care doctor which I booked the appointment (2 weeks later on March 14th). I go to my primary care doctor and she was disappointed I waited so long (I usually avoid seeing her unless it's something major, she's amazing and don't like to bother her with things I think I can deal with on my own). She runs so more blood tests, does some physical exams to test my nerves, etc and immediately schedules me to see her neurologist friend (April 24th).

Another 2 weeks go by and I finally meet with the neurologist, she was amazing, listened to all my symptoms and did several physical exams and ordered more bloodwork while ordering me to get a thoracic MRI while I'm getting blood work. A week later I take a thoracic MRI (May 3rd) just so within an hour after, my neurologist calls me requesting I come in, like tomorrow. So the next day I go in and we joke around (as she enjoyed my dry humor and felt comfortable enough to use dry humor with me, love her), after a few minutes she then asks me if I've ever had an injuries to my neck, a broken neck, anything? I told her I've never broken a bone, the most dramatic injury I had was a car door slicing my finger to the bone. She then stayed quiet for a bit and told me she needs to run on more bloodwork on me... and explained it'd be bloodwork to better assess if it's MS or MS related disorder like NMSO (Neuromyelitis Optica Spectrum Disorder) or MOGAD (Myelin Oligodendrocyte Glycoprotein Antibody Disease), at this point I'm in tears, she then ordered a Brain and Spine MRI.

A week goes by before I get my MRIs, which was on a Friday afternoon. By Monday, I'm stressed as I haven't heard a thing from my doctor yet but then I think it might be a good thing? I go the rest of the day just sitting at the edge of my seat waiting for some sort of response. Nothing that Monday, Tuesday is a new day and I'm sure I'll hear something! Sure enough around 1pm I get a call from the neurologist, she told me I could either go in or let me know what she think over the phone (I've complained about money at this point). I told her, I'm ready to hear, she proceeds to tell me good news! it isn't NMSO or MOGAD! I got happy but then thought wait and asked "wait...so I have MS...?" and she says "you have 6 lesions in your brain, 4 in your spine, unfortunately, I need to refer you to someone who can best handle your MS care as I have no experience with MS, I'm sorry" This was June 7th. I'm hearing all of this while I'm at work, I shed a tear, not because I have MS, I cried about it during my first visit, I'm crying now because I have to switch neurologist and try to build a relationship with them and not all doctors have humor....

At this point, it's another month til I'm able to see him, June 28th 2022. He orders more bloodwork, finds out I'm extremely low on vitamin D (have been my whole life, nothing new), explains to me treatment options to get ahead of symptoms getting worse. I cut him off and told him I'd listen to the one he says is best and most effective, I'm not interested in hearing options, I'm interested in trying to get me to stay up longer. During early May I started having issues walking normal, my balance was/is off and I having moments where I start walking like I'm drunk. So the Doctor recommends I go through Ocrevus, he tells me it's an infusion 2 times a year and the medicine helps my blood not attack my myelin (MS has to deal with blood plasma and some other stuff blood and things in your body does). My first appointment of Ocrevus was on August 15, 2022. During the month of July, I had to get a cane because I fell like three times. I went to physical therapy where I found out how out of balance I am and refusing to go see a therapist. I'm not depressed I have MS, not much I can do about it just live my best life and I don't feel a therapist would understand a single thing I have to say if they aren't going through MS. I know I should see one but again, I need to see someone who would actually understand me.

Because of MS, the biggest thing I've been upset about having is my balance and walking abilities go south. It honestly wouldn't bother me if my career path was sitting down in a chair but that wasn't my career. My career was in the food industry, I was working for a fine dining steakhouse as a manager. I've worked in the industry since I've been 18, 15 years of service. 15 years of learning how to cook, learning how to wash dishes, learning how to prep, how to make drinks, how to take care of customers, how to recipe cost, how to build a menu, how to create training guides for FOH and BOH (front and back of house), how to manage, how to deal with the HR aspect of restaurant life, dealing with accounting, essentially I am a walking restaurant. A walking restaurant that can no longer stay open. I'm trying to get used to my current job, which isn't bad, I'm not working for a bad company but it's nothing like working in the hospitality industry. I'm bored too many times...

Next topic, MS in the latin community and how delayed information can be.