Perseverance Will Pay Off
It’s difficult to find strength and perseverance when you are ill, it’s almost impossible to do so when you are surrounded by people who don’t believe you. I am a 41 year old wife and mother of three children. I am a nurse by trade and have been in the field for over 17 years. I currently am not working, but, once a nurse always a nurse! I have many family members that are, in one way or another, involved in the medical field. I have often relied on their support to help me through very difficult situations and I am so very thankful.
One of these situations involved a medical community that scratched their heads at the symptoms I displayed. There were no explanations for the left-sided severe weakness, fatigue, imbalance, and numbness and drooping I felt to the left side of my face. Multiple tests, and blood work held no concrete answers to my affliction.
Several times in 2008 I was brought to the ER. Some of the discharge diagnosis included “Unexplained weakness”, “Partial paralysis” and “Severe Headache and Vertigo”. Neurology was consulted when I had been admitted and they regarded my condition as functional. Functional, meaning that at the time of assessment there was no known organic or pathological tissue changes found by the physician who was investigating the symptoms. The demeanor of the neurology team seemed unconcerned and more interested in meeting with their next patient. In my experience, with some doctors, I find that they are more comfortable with tangible evidence because the unknown is expensive and can often be misleading. It amazes me the number of symptoms neurology lists as functional. But the patient, not the doctor, pays for this nonchalance. If only I could have heard “I do not think you are making this up or imagining your symptoms”, or “I think this is something that may be beyond my knowledge base”, I would not have felt my overwhelming dread and hopelessness. One can only wonder if the title functional has prevented other medical professionals from earnestly investigating a patient’s medical condition to its fullest extent.
My primary doctor also had reservations as to the course of my treatment. The final decision to switch doctors had been when she declined to write me a handicap sign when she could clearly see that I had difficulty walking and using a cane. I also needed the aid of a walker and a wheelchair when I visited my oto-neurologist in Cleveland.
So, I switched doctors. I was determined to find a primary doctor that would actively work with me to try and treat my condition. During this time I educated myself and researched what a possible diagnosis could be. I gathered all my information from doctor’s visits, hospital visits, every labwork and test I had done and gathered them into a three inch binder. I recorded my symptoms, when it happened, and how long it lasted.
In time I found a new primary care doctor who was both supportive and understanding and was willing to work with my new oto-neurologist from Cleveland. When I had great difficulty walking, I made sure I went to the doctor so that it was documented. When they started me on vestibular therapy for my vertigo and neck pain, I made sure that I did not cancel the appointment when I did not feel good. I needed to make sure that my bad days were documented and that the professionals could actually record my foot drop, my left leg and arm weakness, my lack of muscle coordination.
Documentation, I believe, is the key. Gathering all this information helps your doctors in the long run as they do not need to wait for past test results since you have it with you. It is especially helpful if there is a new consulting physician involved. In my case, both a neurosurgeon and a metabolic specialist were later brought into the case. The neurosurgeon did not feel there were any surgical issues. This was a great relief to me, but I also found myself crying to my husband at the end of that appointment. Because, even though we eliminated a surgical diagnosis, we still did not have an answer to the reason I could not walk.
At the time, my brother-in-law had been following a story about a baseball player whose symptoms were similar to mine. I researched the baseball player’s hometown and was actually able to speak with his brother. He was able to give me the name of the physician that treated him, and as luck would have it he worked at the hospital where my oto-neurologist worked, in Cleveland.
It took 9 months, but with the help of these doctors a diagnosis was made and I was diagnosed with Hemiplegic Migraine. I broke down and cried for the first time in front of a doctor when my oto-neurologist said to me, “This is real and you’re not crazy”. I gave him a big hug and so did my husband who is not a hugging sort of guy.
As some of you know, hemiplegic migraine falls in the category of neurological symptoms with aura and they are episodic in nature. Some symptoms can include visual changes, numbness, difficulty with speech, fever, weakness of extremity. The neurological deficits of an attack can be prolonged for hours to days. The main triggers I have identified for myself were increased audio and visual stimulation, weather changes, too much salt, allergies, and sometimes stress-positive and negative, just to name a few. I finally had some answers and was now able to turn my attention towards trying to control the migraine triggers.
If there is one thing I’d like others to take away from this story is that I believe an individual should be first and foremost their own patient advocate. During those days that you can’t be, assign someone else to be. Stay strong, and never stop believing that perseverance eventually pays off.
By the way, I did get my handicap sign. After leaving my old doctor’s office feeling dismissed and dejected, I was also very mad. I was not going to be discouraged. So I called my new oto-neurologist later that day and he mailed me an order. If one has the will there is always a way.
Thanks for reading.