Phew! It’s not a relapse; it’s a UTI! 😅

I’ve lost count of the number of UTIs I’ve had over the years. Some have been painful, some have had me rushing to the bathroom, but some, I didn’t even know I had.

I’ve spent the last two months occilating between symptoms, with good days in between. I estimate that I am priviledged enough that my good days to not so good day ratio is about 50/50 each month. This means that some days I can go hiking, walking and enjoy myself with minor symptoms. I can take breaks from using my cane, and feel almost normal. Some days I stay in the house and struggle to move between rooms, even with my cane.

The last few weeks I’ve felt my symptoms more keenly. This is normal, because I usually have more bad days around the dreaded time of the month. (You ladies know what I’m talking about. Oh, to return to those good old days of high school when the symptoms I would go through were bloating, cramps and headaches instead of vertigo and barely being able to walk, with bloating, cramps and headaches.)

However, this last week, my symptoms have been more severe and haven’t been letting up. This led to a skyrocketing in my anxiety levels. Currently, I am in the observation stage of a clinical trial of the hoped remyelination drug, elezanumab. I had monthly infusions for a year. As it is a double blind, placebo controlled trial, I am not sure if I received the medication, but there is a 66 percent chance that I did as only 33 percent of participants receive the placebo, 33 percent a low dose, and 33 percent a high dose. I’ve noticed some positives, improvement in my balance, better control of my bladder, better stamina and improvement in my cognitive function. These improvements have been noted by my neurologist, and my EDSS at my July check in at the completion of the infusions went from a 6 to a 3, as I was able to complete the 500 meter walking test without asssistance.

So, when I felt fatigue, gait problems, vertigo, nystagmus and spasticity returning in full force this last month, with fewer good days, I was worried. I am away from my clinical trial team and my neurologist (they are in California and I am across the country in North Carolina. To see why check out my post about our family cross country trip.) Then I had violent spasms last week. The kind that I haven’t had for two years. My anxiety was heightening everyday as my negative symptoms increased. I postulated questions to myself of why I feel worse, wondering whether stress was to blame or something else. Were my symptoms getting worse because of a relapse? Am I going through with-drawl symptoms from the drug elezanumab? Or was this because I don’t have access to medical cannabis with THC in North Carolina, only CBD? Was this why those horrible, awful spasms came back when I hoped I wouldn’t ever have them again? Oh it was nerve wracking.

My neurologist called me when I needed a new pharmacy to refill my prescription for clonazepam. I have only used it three times to get through the night when spasticity is bad, but I forgot the bottle in California. The script was expired and the pharmacy called my neurologist who called me, to see if I was ok. We had a conversation about my symptoms increasing, and she suggested that I get a UTI test from a drug store. I didn’t even know that was an option! They sell UTI tests at drug stores?? I’ve been going through periodic UTIs for over 16 years of having MS. I have agonized many times whether I needed to call the doctor before over a suspected UTI when I had few symptoms, or no symptoms. I’m having no symptoms of a UTI now, but I got the test because I hoped that that was really the cause of my worsening MS symptoms. It has been in the past.

I tested last night. With an at home test, you just pee on the strip, pat with a paper towel and wait two minutes for the results. The results showed very light purple, indicating trace, to light amounts of leukocytes in my urine. A test kit comes with three tests, and the directions said though you can test any time of day, but its more accurate in the morning, when you haven’t gone to the bathroom for at least four hours. (I was lucky last night, I didn’t wake up to go to the bathroom.) The test indicated a medium amount of leukocytes. I emailed my doctor, and am awaiting instructions, and most likely antibiotics.

I still don’t feel well. Nystagmus is creeping back and my face is tingly from exerction of just typing this blog. However, I am so very relieved. Most likely, these symptoms are just another asymptomatic UTI. Also, I have discovered I have an extra option to test myself if I am suspecting a UTI, instead of having to go to a doctor. (Though I have made appointments with doctors here, but I have to wait weeks as I am a new patient.)

Now I at least have any answer, and hopefully after a few days of antibiotics I start feeling better. I wrote this blog, because I am overdue to get a blog out to you guys, and I’m still working on my blog on medical marijuana for spasticity. I hope to have it out soon, but as I’ve been feeling so unwell, it’s taking a bit longer.

But more importantly, I wanted to let you all know, if you don’t know already, that at home UTI tests exist! Pre-pandemic times I would agonize about making an appointment for a suspected UTI because I would need to arrange childcare, an uber or a ride from a family member or friend. Now, that rates of covid19 are increasing as we go into winter, having the option of an at home test, is as good news as having a UTI instead of a relapse!

By the way ladies, did you know that you can get tested for a UTI during your period? I didn’t! My MS Nurse told me that you can arrange for the test at your doctor’s office or an urgent care, while still on your period!

I haven’t shared much for the last week on most of my social media channels. You all give me so much hope, about this elezanumab trial and when I don’t have good news to share, I tend to hold off. I want to be honest, but sometimes that knowledge of people going through symptoms like me, and maybe worse then my own… It just makes me want to wait a little longer until I have another good day, and good news to share. Multiple Sclerosis is a rollercoaster, and as we enter an age of better DMTs, proposed remyelination medications, and the possibility of axonal repair, the future looks brighter, but the rollercoaster can get more intense. I’m sorry you on the rollercoaster as well, but you all going on that ride with me, has made it so much easier. Thank you. When I was younger, I loved rollercoasters. I relished the thrill of steep climbs, stomach flipping drops, zooming curves and upending spins. As I age, and this disease wears on, and I experience MS induced vertigo the ups and downs become fatiguing. We are all looking forward to a day we can finally get off this rickety and splintering MS rollercoaster.

I am still hoping that I am improving, and that improvement signals better days to come, for all of us. I’m going to try to publish that cannabis spasticity blog this weekend, because just as a real rollercoaster, MS is funner when your a little high! Seriously, it’s just better to have less spasticity, better cognitive function, and get away from our symptoms a little bit, and studies are starting to show that cannabis helps some people with MS, minimize some of their symptoms. (More on those studies and current clinical trials to come.)

So until I get that blog out, may God be with you til we meet again.

For more information about UTIs and other urinary problems with MS, see this Healthline article. If you feel like you are experiencing a UTI, call your doctor for advice on the best way to proceed.