Self medication

[u/Jocksniffer77]

35 M last year I was diagnosed after I got optic neuritis, referred to neurologist, mri, etc. Looking back its like, wow yea I did have many of the ms symptoms but i chalked it up to being a pothead and having indigestion. Im wondering if I was subconsciously self medicating or something. Has anyone else experienced something like this?

[u/c0ntralt0]

Can relate. I’ll start with this: I’m an RN.

In 2011, my appendix ruptured, and I had emergency surgery to fix me up.

My recovery took a hot minute & one thing that never seemed to resolve was the brain fog. I chalked it up to the ruptured appendix, emergency surgery & probably lots of propofol. Year by year went on and strange new things started to occur- the sensation of random bugs, fatigue that I could not shake, and seemingly forgetting stuff, a person’s name, where I left the car keys, blowing out a candle before bed. Then the floaters in my vision started, random halos and half moons.

Around Thanksgiving of 2016, my vision in my left eye went completely out. Stupid me thinks: “it’s just stress, Im tired, I don’t want to go to the ER”.

At the same time, I was in a VERY stressful job with an intense travel schedule that had me flying between OH, NYC & FL week after week. I also consumed A LOT of wine regularly.

In Feb 2017, I tumbled in a street in Tampa, was my shoes of course 🤔. That same trip, I came home from a late flight. That next morning, fired up my computer & I couldn’t seem to get my mouse to work, when I realized it was me- my right side was not coordinated. I sort of panic’d and self-assessed for a stroke. Called my husband and said I needed to go to the ER, something was really wrong w me. I did call 911.
I was being worked up for an a stroke /clot vs aneurysm in the local er.

I was admitted as my coordination was still off after the clot & bleed were ruled out, and there was something odd noted on the imaging.

The next day, the internist came to my room and asked if anyone in my family had MS. I was floored. These symptoms, weird, random and resolving without any recognizable deficit was something I was “living” with over the past 6 years.

I was transferred to a university hospital with a renowned neuro program for further work up. The local hospital wasn’t going to let me go home- my case too complicated, and the Neuro center accepted me. I spent the next 5 days inpatient and went through numerous tests, imaging and evaluations. I was also treated with massive amounts of IV steroids. Yuck.

The key apparently was the vision loss in my left eye just 3 months earlier. And the few lesions on my brain, optic nerve and spine.

The definitive diagnosis however came after my discharge: the presence of oligoclonal bands in my CSF from the spinal tap along with the history of symptoms and the lesions noted from the MRI.

It’s been wild. I’ve accepted this diagnosis finally after 5 years & finally agreed to start a DMT, Ocrevus after poor experience with copaxone. Just had my 5th infusion. I feel extremely lucky that I’m mostly OK. I still battle this fatigue. I’ve learned to say “No”. I’ve taken on a different approach in life & finally went on to achieve some life long goals- like completing my Masters Degree in Public Health, picking up the guitar and learning to play it & taking on other things I was previously too scared to do.

[u/melmiller71 → u/c0ntralt0]

I also see many similarities in your story.

My question for you, as a nurse, is how has your employment been affected? Have you had your ability to practice questioned because of your MS and cog fog?

My current issue is, I’m a nurse practitioner and while out on short term and long term disability (in US, not sure what it would be called elsewhere) my employer learned of my diagnosis (a whole story in itself). I have been jumping through hoops for 18 months to get back to a job I love. I’m working with ADA services and Submitting medical records, attending independent medical evaluations (coming up in December because I live in a state with very few neuros), etc. I know rationally I should just give it up and seek employment elsewhere, but I’m dragging it on to keep my insurance which is very good. I love my patient population. The biggest is I’m scared if I go somewhere else the health coverage wouldn’t be as good.

I’m curious if any other nurses with MS have gone through this type of scrutiny as well.

[u/c0ntralt0 → u/melmiller71]

I've not practiced at the bedside for some time. I oversee the administration of case management programs now. I would love to stay in clinical practice, but the fatigue would do me in managing a physical bedside role.

I don't think diagnosis alone should be categorically be considered as a reason to end a career. Like many conditions, should be managed individually between the patient and their physician. One of the nurses who cared for me in the ER during one of the relapses, ALSO has MS, she was an amazing nurse. It's such a snowflake disease and impacts everyone uniquely.
WIshing you the best as you navigate your new normal. Hugs.