A few years ago I started having what I thought was syncope…
My heart would race and I felt extremely fatigued…
I was having chest pain that was making it difficult to breathe…
During this time I had what I believe was my first “episode” which was diagnosed at the time as a complex migraine…
My head felt “swimmy” my body felt weak. I asked a coworker to take an EKG and while she was doing it, I passed out. I woke up to one of our ER physicians sternal rubbing me and when I tried to talk it came out as giberish.
Over the next few days I felt weak and tired. My CT was clear so I followed up with my PCP who ordered an MRI and referred me to neurology.
The MRI was clear so complex migraine it was. The neurologist put me on Topamax. Over the following weeks I had multiple episodes of what was thought to be syncope. I felt weak and so fatigued my body would literally give out. Activity wore me out easily and I felt exhausted all the time. The neurologist thought we just needed to keep increasing the dose until I found what worked for me.
I was convinced it was the medicine causing the problem. I stopped it and didn’t go back to the neurologist.
I felt tired. I come from a cardiology background and my heart rate was always high. I had a stress test. Abnormal EKG’s. I had a full cardiac work up including electrophysiology. Sinus tachycardia. The different p-wave morphology was just an abnormality in my own body.
I’m convinced the LINQ cardiac monitor was placed to appease me.
Something just didn’t feel right!
I went through so many tests and procedures without getting any solid answers.
I went out to Mayo Clinic and received a blanket diagnosis of “autonomic dysfunction”.
Family was frustrated and annoyed with me always thinking something was wrong.
I was just lazy.
Just over sensitive and over stressed.
One NP told me “it’s called having kids, welcome to parenting”
My symptoms didn’t go away but what else could I do? Test showed nothing so even though my gut told me something was not right the results proved otherwise.
I had to let it go.
Over the past two years I have had headaches, shoulder pain, muscle aches, numbness/tingling and other various seemingly random symptoms that I passed off as nothing or simply stress.
Last year I thought I was going crazy… I couldn’t stop crying. I was hysterical and couldn’t control the deep screams escaping from somewhere deep in my core… dark thoughts filled my mind but my mind wasn’t all the way cloudy like a true psychosis should have been…
I knew something wasn’t right. I knew I wasn’t right. I had no control.
Ignore it. You need more rest. Eat better. Exercise right. Just ignore it. It’s simply stress…
Until 4 weeks ago when I had a “complex migraine” that quite literally knocked me on my ass.
I attempted to go to work. I felt dizzy but normally my dizziness and headaches go away after a few hours and I’m fine. I wasn’t fine.
Co-workers said I looked pale and like shit.
My charge nurse was talking to me when I started experiencing aphasia.
“What, does, have….”
“What does have…”
Attempting to ask what Excedrine Migraine had in it because I had already taken Tylenol, ibuprofen, meclizine, and phenergan (a cocktail that always solved my issue). I couldn’t get the question out. I tried to say other things but all I could get out was
“What does, have”
I felt like “hol-dor” from GOT stuck on repeat unable to say anything else.
Coworkers were concerned but I always get better after a few hours I didn’t want to be seen. I laid down and waited for a ride. My left arm and leg went Flaccid. My left eye lost peripheral vision and felt like something was pushing on the back side of it. My left side of my face felt tingly and swollen.
I went home and slept for close to 36 hours on/off attempting to get up to take care of my kids. Thank God for Mike who insisted I rested and helped with the girls.
After about a week I started to feel a little better and less fatigued, but something was still off.
I felt clumsy. Kept dropping things and tripping on my left foot. My words kept getting mixed up, simple things like saying foot instead of shoe or mixing up the order of a sentence.
Stress. It’s got to be stress. I was under a lot of stress…
One day my eye started having pressure that caused numbness and tingling down my face, neck and left arm.
Coworkers convinced me to follow up with my PCP, which I did.
“Probably nothing but let’s do a repeat MRI just to ease your mind”
I’ve programmed myself to think I’m just being ridiculous.
“You’re always so dramatic”
Am I “that” girl?
I do not want to be “that” girl.
I know when something is wrong. I always have. I just don’t always listen to that voice because of what other people will think.
My intuition was right.
MRI showed multiple bilateral lesions consistent with Multiple Sclerosis (MS) the largest of which is behind my left eye. It notes the the scan from 2 years ago with the same lesions. The scan that reports a negative MRI and nothing noted in the exam narrative about the lesions.
Today I have marked weakness in my left arm and leg. After having multiple falls last week I️ can hardly make it up stairs. I can no longer braid my own hair. My head feels funny and I can’t describe the painful “clicking” sensation in my neck and upper back. A short walk through the store is exhausting and my words are lost when I get frustrated.
I’m frustrated, annoyed and relieved.
I’m not crazy.
Why didn’t anyone listen.
Why didn’t anyone see?
Why didn’t I listen to what my own body was telling me?
Why didn’t anyone look at the scan instead of just what one radiologists interpretation of it was.
Looking back hindsight is 20/20. There are a lot of things, almost everything I’ve gone to the doctor for in the last 5 years that could be related to MS but I never connected them, I came in with individual complaints as each flair had unique symptoms of their own many chronically recurring….
I can’t go back. I can’t do anything different. I can’t change the past.
Only negative things come from all the stress.
Gotta stay positive.
Gotta keep pushing through.
It is what it is, now let’s just get to fixing this!
Even if the MS specialist says that it is what it is… we will deal with it.
You have MS, you don’t have to let MS have you…. don’t let it change you.
I’ve got too much to do to let it get me down.