Is It All In My Head?
Why am I experiencing all of these strange symptoms? Death-like fatigue. Buzzing sensations on the soles of my feet. Clumsiness and weakness. Double-vision. Do I visit my Primary Care physician or an eye doctor?
“It is estimated that the average patient sees at least eight doctors before an MS diagnosis is made.”
What’s the matter with me? I’m not anemic. Am I just stressed? Am I crazy?
“One man complaining of numbness in his hands and feet, stumped physicians for two months; he had no abnormal findings and he was a neurotic personality. Although he had MS, his problems were originally written off as psychological.”
Let’s face it. “Doctor-shuffling” ranks as one of most notorious complaints patients cite in their efforts to nail down a reason for the mysterious symptoms that herald the arrival of MS. Another oft-heard grievance is the wholesale dismissal of problems when initial lab tests reveal no abnormalities. The “come and go” nature of MS, the strange and seemingly unrelated symptoms, the absence of a singular diagnostic test, and the tendency of some physicians to classify women’s complaints as “psychological” has caused many a patient to question their sanity and wonder aloud: “Is it all in my head?”
The answer is an unqualified yes! But not in the way you may think. You are not losing your mind. MS is in the head; often appearing as scarring of nerve fibers in the brain. It is a disease that causes very peculiar symptoms that show up in assorted ways and to varying degrees. This makes a definite diagnosis of MS particularly difficult to pin down.
Back in the early 90’s, I began to question my own sanity when I started experiencing odd cognitive and physical difficulties that defied explanation.
I was working pretty hard back then with a full-time job and working on my Master’s degree. One night on my way home from class, I became completely disoriented. For some reason, I simply couldn’t remember where to exit the subway even though I had taken this same route twice a week for nearly a year. In a panic, I jumped off at a downtown stop, stumbled up the stairs to the street, and looked frantically for some familiar landmark. There was none. Totally confused, I simply started walking in the isolated cloak of darkness, trying to convince myself that I was heading the right way toward some recognizable destination. After several blocks I came to a dead end and realized I was totally lost in an area that I knew as well as my own living room.
The terror of that moment on that dark street corner was beyond description. After several minutes, my senses returned to me, and I made my way home (noting that I repeatedly tripped over my feet each time I came to a curb).
I concluded that this problem was due to “fatigue” and I put it in the back of my mind.
But two days later, the MonSter made another attack. Suddenly, my left arm was gripped with a numbing pain. It reminded me of the feeling you get when a blood pressure cuff is pumped up too much. I kept rubbing and massaging my arm; hoping to alleviate the uncomfortably tight sensation. I vaguely wondered if I was in the throes of a stroke, and made a mental note to contact my doctor. The numbness lasted a week and then left as abruptly as it began.
I concluded that this problem was due to “stress” and cancelled my doctor appointment.
One week later, as I was stifling a yawn in the middle of a staff meeting, I suddenly realized that the speaker I was trying to focus on was splitting into two images. I blinked my eyes and she was whole again. A few more minutes into the presentation and my vision crossed again. The room morphed into a confusing jumble of twin-like images seen through a kaleidoscope. As I stood to leave the room, I realized too late that my right foot had gone completely numb. I nearly twisted my ankle attempting to get out of there.
I concluded that something was wrong with me, and I followed through with the first of many doctor appointments.
Doctor #1 took my blood pressure and desultorily examined me. Said my pressure was normal and told me to come back if my arm went numb again.
Doctor #2 gave me a series of lab tests. Checked my thyroid, my iron levels and blood pressure. He told me the tests came back fine and that I was probably just depressed from my workload. I was advised to take a vacation or see a psychiatrist. My choice.
Doctor #3 gave me a vision test. He appeared alarmed at something he saw during my examination. Sent me to a specialist.
Doctor #4 gave me a more comprehensive test. Seemed worried by the double vision and wanted me to see a neuron-ophthalmologist.
Doctor #5 put me through the works. By now my legs had become severely affected and I was having extreme difficulty walking. Suspected either a tumor or MS and suggested an MRI (which I had to fight my primary physician to approve-but that’s another story!).
Doctor #6 relented and approved the MRI. Based on all the testing, my history, the MRI, and the exam findings I was given a definite diagnosis of MS. I was then sent to a neurologist for treatment several months after my initial symptoms. (I often wonder: if treatment had started at the onset of my symptoms instead of nearly a year later, would my MS have progressed as rapidly as it did?)
According to the earlier statistic, my journey through six physicians was not a unique phenomenon. But in all fairness, this is not a disease that is easy for even the most dedicated doctor to diagnose. I believe that most physicians want to give us answers but may not have the evidence to do so. The main problem lies in the fact that there is no definitive test that says: “Yes, you have MS.”
In order to diagnose the disease, the physician must be assured that the attacks suggest lesions in a minimum of two sites in the central nervous system: brain stem-cerebellum, optic nerve, cerebrum, or spinal cord. In addition, physicians look for a history of attacks and remissions. This sometimes necessitates a “wait and see” approach over time: you may initially have evidence of a lesion in one site but not in another, or lack a characteristic pattern of the disease.
The doctor also rules out other diseases that mimic MS such as Lyme disease, Meniere’s syndrome, stroke, tumour, or neuritis. Then neurological exams, patient history, and tests such as MRI, spinal tap, and evoked responses are used to further confirm a diagnosis. Because there are so many variables, it is not surprising that this process can be frustratingly protracted for both the patient and the physician.
It is imperative that patients be assertive in their quest for a diagnosis. But you must also be patient-an accurate diagnosis is considerably more important than a speedy one. Most important of all, is to listen to your body and to believe it when it speaks to you. When you feel that something is not quite right with you, don’t be so quick to dismiss or rationalize it. Work with your health care professional to find out the source of your problems.
It’s not crazy to want to know why you feel the way you do. The insane thing is to ignore the voice inside you that warns you strongly and clearly that something has indeed gone wrong.
See MS Facts for more information on diagnosing MS
NOTE: This article is derived from personal experience and countless hours of reading MS-related materials. It is intended for general information only. It is recommended that you consult your physician or other health care professional for specific advice on your health care choices.