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How My Health Is Changing My Life - Part 2

Posted 02-07-2012 06:07 AM by dogmum

This past summer, apart from the intestinal disturbances, was absolutely lovely! I worked as a volunteer with animals (dogs and mini farm animals) at a center that provides pet therapy to the local hospital as well as day trips to local schools. So, LOTS of activity. Lots of rewards emotionally. And lots of exercise and sunshine. It was in this beautiful sunshine, near the end of July, that I started to experience occasional double vision and severe light sensitivity. I bought a hat and a new pair of sunglasses and brushed it off as working too hard in the heat. It did improve a bit as August rolled around and the temperatures cooled off a bit, but by September was back again and by now seemed a permanent problem.

At the end of September, I finally gave up on it "just going away" and went to see my eye doctor. I remember climbing the stairs to get to his office in a historical old building in the center of town for a 9:30PM appointment on a Friday night, feeling all the effects after working an 85 hour week. He put the first drops in my eyes and the next thing I know I was waking up on the floor. I've had an eye exam every year for 20 years and never had a problem with any drops and I still wonder why I reacted to them, but I did. After I was out for 15 seconds the poor quiet little eye doctor was starting to panic and was asking my husband if I had a history of seizures. No, I don't and this was the first time I'd ever fainted in fact. Eventually I wake up and he continues the eye exam. He gets far enough to tell me that I have no problem with my eyes before I nearly faint again. He sends me home and tells me to go to the ER on Monday morning when he will be in the hospital and can refer me to a neurologist. I go home, glad the week is over and glad to get some rest.

Monday morning, as planned, I head to the ER. One great thing about a small town is that I only waited about 15 minutes even though I was marked as the lowest priority. They sent me to see the eye doctor who gave me a referral for an urgent neurological exam back in ER. I was admitted to the hospital's neurology department for 5 days during which time they did an EMG, brain MRI, and some blood tests. Everything came out clean, but still seeing severely double (one image sitting about six feet over the other), I was sent home with a diagnosis of possible myasthenia gravis and a bottle of pills (Mestinon) to take four times a day.

Within a few days of being home I was having a LOT of positional tachycardia, muscle twitches, and seemed to be shaking now most of the time and blamed the Mestinon. I went to see my neurologist a few weeks into this and she said that these were impossible side effects of Mestinon and that I should continue taking it and so I did. By the end of the month I was in the ER, too weak to stay on my feet, but still shaking from head to toe. Mestinon was suspended by the neurologist on call and I was given some paperwork to take to my GP for meds that he should write scripts for.

The next day, sitting in the GP's waiting room I collapsed. A pain in my chest (that I've had for a while now, but always thought it was a rib out of place) got so strong that I couldn't catch my breath and started to hyperventilate. I felt like I was suffocating from the squeezing pain around my ribs. My GP came out to call me in and immediately dialed for an ambulance and away I went back to the hospital for 5 more days. They gave me some anti-inflammatory drug for the pain and by the last few days of this I noticed that my vision was getting better. But, no one would believe me and they insisted that there was nothing at all wrong with me that those drugs could help. And once again, they didn't find anything wrong with me (they only did some blood work this time), but couldn't explain why my legs were trembling so badly that I fell at least 3 times between the hospital bed and the bathroom while there. So, home I went.

The next few weeks were difficult. On me, yes, but also on my husband. He was worried about leaving me alone. I was worried about him missing work. My legs kept "quitting" on me and I got a few nasty knots on my head during this time. My neurologist spent most of the time we spent talking telling me that these symptoms are "impossible" with MG and that they were all a result of stress. She put me on Xanax and an antidepressant which made me spent most of my days laughing, although not feeling too happy about things, and then referred me to a psychiatrist saying he would help me work through all of my symptoms. I had already seen the poor guy twice in ER and after one "real" appointment with him he sent me away with a letter of good mental health and the names of two internal medicine doctors he recommended, suspended the Xanax and antidepressants, and told me to use his letter as a "get-out-of-jail" card if they tried to send me back to him.

Then my eyes, as though the diplopia wasn't enough, started to hurt. Mid-November I lost the sight in one eye completely just for a few seconds, but when it came back, the colors were washed out to be about half strength. I remember laying in bed closing one eye and then the other alternately while staring up at our red curtains and wondering what the heck was going on. We called our neurologist about it and she said this was nothing to worry about, but that if I was worried I could go back to see the eye doctor again.

Trying not to hold my hubby back or hinder his work, I was going in with him to our little office and sitting at a desk in the back room. Getting up one evening at around 5 I fell and was shaking too badly to get up. At around 8, my husband called an ambulance and back to ER I went. They wanted to admit me again, but confessed that there were no more tests they knew to run and that it would only be to "rest" so I chose to go home.

Feeling my options start to wane, I made an appointment with one of the internists that the psychiatrist referred me to. He, as all of the others, had no idea what to tell me, but hearing that the anti-inflammatory drugs had helped a bit with my diplopia and noting a difference in my pupil reactions, he agreed to prescribe me anti-inflammatory drugs again, stronger this time and with a longer treatment time. He did say that it was 99% most likely that it was a coincidence that they helped before and that it wouldn't work a second time, but that perhaps the steroids would help me to get my strength back. My neurologist seconded this opinion.

Five days in, I notice that the color is improving in the eye that previously suffered the loss of vision and that I only have diplopia about 60% of the day. Within another week I'm seeing the world as just one again 80% of the time and my neurologist, although looking at me strangely, is once again on the MG path. She extends my treatment indefinitely and orders a CT scan of the chest to look for a residual thymus gland. Within a few weeks more I am back in her office hearing her plan to send me to the thoracic surgeon.

First of all, her dx of MG is based only on me having diplopia that responded to steroids and a very (VERY) small residual thymus gland.
Secondly, I've been treated with steroids (with very good response) for just a few weeks.
Thirdly, she is still ignoring a whole slew of other symptoms as psychological. (vision loss, tremors and muscle twitching, an electric "shock" in my leg when I look down, pins and needles in my left hand)

I should also mention that during this time, I was also running to appointments with a cardiologist (for the tachycardia and chest pain - ironically, he asked me to see a neurologist about the chest pain which looked to him like a kind of nerve pain), hematologist (elevated which blood cell count - he asked me to explain again to my neurologist as clearly as I could everything I told him and sent me back to neuro again), and thoracic surgeon (who didn't sound thrilled about doing the thymectomy - red flag). I also had an x-ray of my back and neck which were textbook perfect.

With the prospect of surgery hanging over me - especially one that would fracture my sternum an leave me with lifelong scarring, I sent all of my records off to a neurologist in the US, looking for some direction and advice, even if vague due to the long distance. The reply I got suggested finding a new doctor, saying that the symptoms I had which had been brushed aside could be good indicators of a very different direction. I was also advised to ask for an MRI which included the C-spine and T-spine along with a lumbar puncture. If possible, in this doctor's opinion, I should come back to the US where I would be put in touch with a multiple sclerosis specialist in her hospital.
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