I’m scared. In fact, I’m petrified.
Call it intuition, call it self-awareness. I suppose, call it whatever you want. But I know, deep down in my gut, that something is wrong.
Just like I know, even when the doctors do not, when there is something wrong with my children. I know if a cough is really pneumonia, and whining is really about to turn into a fever. So, I suppose it is safe to recognize that same intuition when it applies to me.
On July 8th, I was standing in my kitchen, on the phone with my mom. I had just come home from the gym. Kids were playing, mom was talking. And, all of a sudden, I couldn’t see. No lights or spots appeared. I just couldn’t see, and then it felt like I was cross-eyed. I couldn’t focus no matter how I blinked or shook my head to clear it. I felt like a cartoon character trying to knock the side of my head to correct my vision.
When I told my mom, she had me sit and close my eyes. Didn’t work. She told me to hang up and call my doctor. My shaking hands and crossed eyes found my way to my purse and began to feel for a business card I knew had my doctor’s number on it. Of course I couldn’t focus on it, but was able to make out a number or two that prompted my memory. It was while I was on hold waiting for a nurse that my vision started to return…but it was hazy and there was a lot of pressure focused in and around my right eye.
Because I expressed my fear of strokes, because I had never lost my vision, because my husband was out of town, because I was home alone with 2 children., because I was frightened…I was eventually told to go to the hospital.
They didn’t even check me in before taking me back for an examination and a cat scan. The diagnosis: (which I later found out was a diagnosis of exclusion) an ocular migrane. I never got a headache. I was given a migraine cocktail (miserable by any one’s standards) but the cocktail was administered 4 and a 1/2 hours after my eye episode. I was sent home.
The next night, on the eve of my daughter’s 4th birthday, I sat down at the computer and within 5 minutes, felt a numbness and tingling move its way down my right arm. My husband was still out of town. My irrational mind could think of nothing except “I cannot die on my daughter’s birthday.” I ended up on the phone with my doctor. She (God love her) calmed me down. She explained that a stoke would effect my right eye and my LEFT side (or vice versa) but said she wanted to see me again if the symptoms persisted.
They did. My right side, my dominant side was slightly weaker. My right eye moves slightly slower than my left. My fear was MS. Based on the symptoms (loss of or trouble with vision, tingling, numbness or heaviness in extremities, loss of coordination, fatigue) I was a poster child. But an MRI of my spine and brain revealed no lesions that are indicative of the disease.
I visited a neurologist. She looked at my MRI, examined me, looked at the MRI again to make sure she hadn’t missed something, and told me we had a few options: it could be MS (but she highly doubted it since there are no lesions visible), it could be migraines or it could be stress.
P.S. I get headaches all the time, but not what I would classify as a migraine. And, I wasn’t stressed until all of this started happening….and I was alone with the kids. I already have fibromyalgia. I has lived with it for 16 years. I was diagnosed by a leading rheumatologist in Los Angeles long before the disorder became truly recognized.
The neruologist seemed to think a ‘fibromyalgia’ medication might help. It would decrease the physical pain, and, oh by the way, it might also help my stress. As it turns out, Cymbalta is marketed as an anti-depression medication that could help with aches and pains rather than the other way around. After taking it for 3 weeks, having terrible headaches, and being unable to go to the bathroom for a week of that time, I stopped taking it. It hadn’t improved my symptoms and it was making me feel worse.
Five days ago, my symptoms intensified. I lose my balance when I am standing still. I am constantly dizzy. I often feel like there is a current running from the top of my head down my neck to my shoulders and out both arms. My mom described it as an ‘inside shiver’. That is a perfect way to explain it. It sometimes appears as though someone has ‘dimmed’ the lights in the perimeter of my vision. It is all worse at night when I am most tired. I am constantly stopping in the middle of sentences, having lost my train of thought, or unable to grasp the word I need to continue.
I have experimented with food to make sure it is not blood-sugar related. I have tried going to bed earlier in the hopes that my eyes are tired. I was hopeful I might be experiencing the onset of the flu.
I went to visit a chiropractor (despite my irrational fear of being paralyzed by a quick snap) in the hopes that there was a misalignment causing the heaviness on my right side. The chiropractor is wonderful. She is gentle and kind. My x ray was fine. Another test she did was not. It is computerized, Nasa Technology that can determine the amount of strain/pressure on each muscle surrounding your spine and neck. My scan showed as ‘severe’ and ‘off the charts’ on the right side. She hopes treatment can alleviate the right side dysfunction.
I have an appointment with a neuro opthamologist next Friday. In my perfect world, the chiropractor fixes the problems on the right and the numbness, tingling and heaviness abates. And the neuro opthamologist says, “Girl…you need glasses” …that will fix all the visual issues. And then I go back to normal, right?
Except, I really don’t think so. I just feel as though there is really something off. I don’t trust that I can see everything in my perimeter when I am driving. I’m not confident that my body won’t betray me while I am picking up the kids or carrying them up to bed. It feels as though there is someone else at the controls. Someone else is playing with my internal temperature gage…hence the inside shivers. And someone else keeps dimming the lights or making me blurry…causing me to shake my head constantly in an attempt to clear the horizon.
I hate to ask for comments…but, since I’m at a bit of a stalemate…I would appreciate any thoughts, insight or suggestions.
Update: I was prescribed Cymbalta by the neurologist – an absolute nightmare. It took close to 6 months to remove it from my system.