I was diagnosed with MS in 2004. However, like many other MS patients, I can look back and see at least one instance where I had an odd symptom that didn’t make sense at the time.
From September to December 2002 I was SWAMPED with stress and responsibilities. I was 26, finishing up a pharmacy technician course by doing a practicum in the local hospital a couple days a week on top of my part-time job at a local community retail pharmacy. Our son was relatively newly diagnosed with autism; the stress of his diagnosis was still very difficult for his dad and me to work through although Jacob himself was doing well in preschool every day at two separate preschools (a scheduling nightmare but we figured it out).
During this time I started having this tingling sensation that started on my left shoulder and would track down my arm until it got to my fingers and then went away. It happened at least 3 or 4 times a day. I was never overly concerned about it, I just assumed it was from stress and didn’t feel it was a big enough thing to warrant the waste of precious time it would be to go to a doctor and try to figure out what was causing it. I’m left-handed, so for fun when I felt the tingle start at my shoulder I’d start writing something just to watch my handwriting go STRAIGHT to hell for a few seconds. It was fascinating. And it did stop happening once I finished my practicum and wasn’t as stressed out.
And, there was a couple instances between 2001 to 2003… not so much instances of symptoms, but..
Okay, let’s drastically ‘short story’ this part.
Marriage is HARD. Having a disabled child is HARD, especially in the early days of diagnosis. Make no mistake, I’m POSITIVE it was also hard on my husband and son, good Lord, but I just… I overthink and worry at the best of times. I joke that when I found out my blood type is A+ I was like “OF COURSE it is!”
Anyway. There were some tough times in there. ‘In there’ being ‘for a couple years’.
This is relevant because I REMEMBER, more than once, being curled in the fetal position, sobbing, and having a single small thought – “this cannot be good for me. I wonder if this is doing bad things to me?”
Oh. Yes. I’m pretty sure it did. I was thinking about that span of time in my life when I wrote this in June 2016 –
Monday, July 12, 2004 – I woke up and my ankles had itchy as all heck dime- to quarter-sized blotches on them. Hives. I went to a family doctor at our local clinic. He told me he didn’t know what it was and I should just treat the itchiness with some Benadryl cream and pills. I did. I didn’t have time to take Benadryl pills and be sleepy, though, as by that time I also had a 5-month-old baby girl to take care of.
Tuesday, July 13, 2004: itchy hives are now all over my lower legs and up to my knees.
Wednesday, July 14, 2004 – hives are up to my hips. Go see another doctor. He prescribes a stronger antihistamine pill which I don’t take during the day because again, I have a baby to take care of.
Friday, July 16, 2004: hives are up to my armpits. To make it more interesting, that evening was also the start of my 10-year high school grad reunion weekend.
Desperate, that afternoon I got in to see another family doctor, third one in five days. FINALLY, this doctor said, “you know what? I have only ever seen something like this one other time. Twenty years ago, in England. It was bacterial. Here’s an antibiotic, let’s see if this does the trick.”
And it did. Within an hour, the itchiness was gone and the hives were starting to calm down.
I don’t know for sure if the mysterious itchy hive infection triggered my MS. I include it in my story because, if nothing else, it seems like an awfully suspicious coincidence considering that the very next day..
Saturday, July 17, 2004: my first recorded MS symptom (which of course I didn’t know at the time).
So anyway, Saturday evening we’re having the reunion banquet in a local community hall. It’s freaking hot allll day, by the way. All of a sudden my vision gets ‘tingly’ and blurry along the right side of vision in my right eye. About 1/4 of my vision was like looking at TV static.
I thought, “oh hell, is that an aura? Great. I’m getting a migraine.”
Happily a migraine never happened, but my vision didn’t clear up, either. It stayed blurry in the my peripheral vision and was still there the next morning – similar to looking through an opaque lightbulb.
We went to the States on that Monday to visit my husband’s family, and while there went to an optometrist. A family friend. The short story is he didn’t know what it was (or maybe he did but didn’t want to be the one to tell me..?) and suggested that I see my family doctor when I get back to Canada. All I heard was “blah blah it’s not an emergency,” so I’m sure I thought something like “well thank you, at least I’m not dying so I’ll ignore it some more,” and went home.
The blurry spot gradually went away over the span of about two weeks so I merrily pretended it didn’t happen.
Happened again a couple weeks later, in my left eye this time. Same amount of peripheral vision was blurry opaque. I went to a local optometrist who also had no idea & couldn’t see anything wrong with my eye.
Again, the blurred vision lasted a couple weeks and went away on its own. Weird. And again: I was not bored so I just hoped it wouldn’t happen again (technically, the good news is that it never has).
In case you didn’t guess already, that summer I was pushing the stress levels again: a baby under six months old, an autistic six-year-old, plus I’d gone back to a pretty stressful part-time job in July (I went back early from maternity leave when a coworker left on her maternity leave).
Early September 2004: my eyes were finally all good, but at the same time I noticed I was having balance issues. I kept misjudging doorways; plow into a door frame a couple times, you remember it. There was a waist-high wall and gate into the pharmacy dispensary – I slammed my hip into that a few times. I would be walking the length of the store in what should have been a straight line and yet I’d find myself slightly veering to one side and having to make last-second course adjustments so as not to shoulder-check oncoming people.
Sunday, September 12, 2004: I accidentally diagnose myself with MS.
We went for a walk that afternoon, as we often did. It was a beautiful fall day, the walk was about half a mile, I think. Close to the end of it I was starting have an oddly hard time lifting my right foot while walking up a hill. Plus it was kind of tingly, like my foot was ‘falling asleep’. So I decided, to ease my mind, to Google MS symptoms when I got home ‘just to rule it out’.
Why would I think to rule MS out? Well, my older brother also has MS. He was diagnosed in 2002 at the age of 28. I kind of knew his one symptom was a leg problem or something(?) but it never occurred to me that it was something *I* might have, too, because the only other thing I knew about MS is that it isn’t supposed to be genetic.
So I got home from our lovely walk in September of 2004, went downstairs, fired up the computer and Googled ‘MS Symptoms’. If you’ve not yet noticed, I was coincidentally 28 years old.
Aside: THIS is why I tell people: DO NOT GOOGLE ILLNESSES ON A WEEKEND.
BAM. Just like that. Thanks to the miracle of the internet I instantly saw a check list of symptoms that I was currently experiencing or had experienced within the preceding couple of months –
Screenshot from WebMD Multiple Sclerosis Symptoms.
Oh, and see that top symptom? Oh yes. Not only did I find the answer to my balance problems, I also scored the answer to the mysterious eye problem that two optometrists had failed to pinpoint. Which isn’t really their fault, they just weren’t the correct medical professional to go to. Apparently.
Anyway,further search on ‘blurred or double vision’ yielded more detail:
“OPTIC NEURITIS: An inflammation of the optic nerve that can cause a sudden loss of vision, usually in one eye; blurred vision; and eye pain. Optic neuritis is the most common MS-related vision problem. Approximately half of people with MS will have at least one episode of optic neuritis. Frequently, it is the first symptom of MS. Optic neuritis may result in blurring or graying of vision.” (Emphasis my own, from Common MS Symptoms: Vision Problems)
I remember going upstairs and saying to my husband, “Well that was easy. I am pretty sure I have MS.”
I called my mom. I’m sure I tried to sound breezy and unworried. She called my brother, who gave her his neurologist’s phone number in Edmonton.
Problem: everybody knows that you can’t just call up a neurologist and make an appointment; you need a referral from a general practitioner first and even then the wait will probably be several months.
Monday, September 13, 2004:I went in to see a GP, any GP, in our local clinic for a referral. Again, I don’t know what I sounded like, but the wonderful front desk ladies got me in, with no appointment, to see my favorite doctor.
Of course the moment she walked into her exam room I burst into tears.
What I remember: me babbling/sobbing about MS symptoms and my brother and I just need a referral to his neurologist Dr. Warren at the University of Alberta and he’s probably got a waiting list a mile long but maybe he’d be interested in the sister of another patient? I remember her calmly testing my reflexes and such and asking if it was maybe the flu? I remember nearly choking when I snort/laugh/sobbed at that.
And clear as day I remember her saying, “Go home. I’ll see what I can do.”
So I went home, which is only about 5 minutes away. Within 10 minutes my phone rang.
It was my doctor. She was calling to tell me that I had an appointment with Dr. Warren at 11:30am THE NEXT DAY, September 14, 2014.
~ to be continued ~