It’s the never-ending story…feel free to skim or skip the details.
The next day, my PCP called me to see what was going on and what I needed. He ordered an MRI and put in a referral for a neurologist. A day or so later, I got a phone call from one neurologist’s office saying they could see me the next Monday and a letter from my PCP’s referral for April 21st (nearly two months!). I decided to keep both appointments just in case. In the meantime, I have a constant headache that two or three times a day becomes severe and disabling. Pain medications don’t make a dent. The facial paralysis becomes more cyclic and I have periods where an outsider can’t really tell that anything is wrong as long as I don’t smile. However, I can still feel minor “tremors” for lack of a better description in the muscles.
On Monday, I went to the neurologist. He did a standard neurological exam and asked questions about my medical history. Alarms started to go off when he asked “Isn’t insulin resistance the same thing as diabetes?” and “What is PCOS?” Both of these have been “buzz diseases” in medical literature of late which I would think would be pretty hard to miss with even a casual perusal of medical journals. He obviously hasn’t been keeping up. He was more concerned with my blood pressure, but didn’t think it was related to the neurological problems (another thing that didn’t make sense to me since I didn’t have high blood pressure until the neurological problems occurred—I had even been to the doctor just three weeks earlier with normal blood pressure). He said I should get that taken care of right away, but like every other doctor didn’t write any kind of prescription or say how to take care of it.
The neurologist had the primary findings of hemifacial spasm caused by compression of the of the facial nerve (seventh cranial nerve) and right-side facial dystonia. The question remained as to what was causing the symptoms. He seemed to think that nerve entrapment/compression is the most likely cause (from blood vessel compression, etc.), but other possibilities include myasthenia gravis, MS, tumor, and a myriad of others. I already had an MRI scheduled for that Wednesday and he added an MRA and some blood work to test for myasthenia gravis and thyroid irregularities. Although I wasn’t completely comfortable with him, he seemed to be ordering all the right tests, so I decided to give him the benefit of the doubt.
In the meantime, I call my PCP’s office again for follow up on the hypertension. He is booked solid because he had been out sick, but the receptionist suggested I wait for an appointment with the nurse practitioner associated with the clinic. The nurse practitioner was abrupt and rude. She was obviously irritated that I was there, and when I said that the neurologist had wanted me to come in for the high blood pressure, she wanted to know why he hadn’t written me a prescription himself. She started asking about some symptoms and when I tried to answer she cut me off saying “I only want to know about things that are related to the high blood pressure.” As if I should know what was related to that and what wasn’t. She gave me a prescription and I started to leave.
As I was walking out of her office around 5pm, my PCP called to see if I had been taken care of. He asked what prescription I had been given and said he would rather I take a different one because the one the nurse had given me would aggravate my asthma (of course that wasn’t “related” to the high blood pressure, so she wouldn’t have known that was an issue). He directed me into his office, listened to the problems I was having (finally someone listened!) and started me off on a very low dose medicine because he didn’t want my blood pressure to go too low as I had not had hypertension previously. He listened to my heart and lungs and said I had developed a heart arrhythmia, possibly caused by the spike in my blood pressure. He also ordered more blood tests for the next week because sometimes the medicine could affect the kidneys and he wanted to make sure that wasn’t happening. He also asked me to keep a blood pressure log to monitor how the medicine was affecting me.
After getting all the tests done and giving time for the results to come in, I called the neurologist’s office to set up a follow-up appointment. After I arrived, the receptionist realized they didn’t have the MRA results in, so she called and had the radiologist’s report faxed over to their office—obviously he hadn’t bothered to look at any of the films.
Dr. Martinez-Prieto came into the exam room and looked at my test results and said everything was negative. He apparently decided that I was all better without asking me or doing any kind of physical examination. Then, barely looking at me and with a cursory glance at his notes from the last appointment said it was blepharospasm of unknown cause which can come and go and if it happened again I could get medical botox to treat it. When I said that the symptoms were not gone and tried to explain that they came and went on a daily basis, he basically ignored me, saying "Your eye is open now, isn't it?" I happened to know that blepharospasm just involved the eyelid from my internet research, so when I asked about the mouth droop, which is always there, he quickly glanced up and said "It's hardly noticeable" without even asking me to smile or open my mouth to see the extent of it. I tried to ask about the headache and he interrupted me and said that the facial muscles often get tired and sore from the spasms, repeated the possible botox treatment, said "Okay?" and left the room. He did no follow up physical exam of any kind the entire office visit. Needless to say, I was not very happy with the appointment and was frustrated and angry. After a long cry and a good night’s sleep, I decided to keep the appointment with the other neurologist to get another opinion.
Up next: March Madness, Part 4: The Motor Vehicle Accident
I got many weird looks and comments regarding why someone like me would need a minivan, but I paid them no heed. My van has come in very handy in my calling as YW president and in hauling things around (the seats in the back fold down making it almost as useful as a truck) and on vacation this summer. Overall, I am pleased with my purchase.
