Bonnie’s MS Journey
The first MS symptom that I experienced was double vision. In the early 80’s I saw a shadowy outline of all objects in the distance. Sometimes the object separated into two distinct items, one lighter than the other. The shadowy outline seemed to float to the left and up a little. This shadow was similar to shadows that used to appear on TVs when we have poor reception. I mentioned this to my doctor and to my optometrist off and on for a few years and then I stopped, when I realized that they were not as concerned about this as I was.
In the mid 1980’s I was diagnosed with a mood disorder. (Since my MS diagnoses I have discovered that mood disorders can also a symptom of MS.) Late in the 80’s I went to a new optometrist and mentioned my vision difficulty. She immediately tested me with a special instrument and verified that I did indeed see double. She prescribed prisms to be added to my glasses. It was nice to see single objects again. (Double vision and other vision problems can also be a MS symptom.) My double vision comes back, even though I have prisms, when I am tired or when it is hot outside.
In the early 90’s I started to experience strange, disappearing symptoms. These symptoms were well and active at home but hid themselves from my doctor. I did not experience all of the symptoms all of the time, they seemed to rotate.
Some of these disappearing, rotating symptoms were:
- fatigue
- blurred or double vision (even with the prisms)
- eye pain (quick stabbing pains that disappear soon after they arrive)
- muscle weakness
- muscle spasms
- restless leg syndrome
- foot drop (one foot drags along the floor when walking causing one to trip, stumble, or fall
- numbness and tingling in my left arm
- itching in one spot for no reason
- the feeling of bugs crawling along my arms
- sometimes I was less coordinated
- I had imbalance
- slight tremors of my left arm and leg
- urinary incontinence
- slow word recall
- forgetfulness
- short-term memory loss
- other cognitive problems
- impaired speech production
- sensitivity to environmental heat
In the summer of 1992 the symptoms were more intense and stayed longer. I started to have times where I experienced greater imbalance difficulty. My right foot started to drag as I walked, this is called toe-drop. My left hand and arm developed a tremor. Fatigue started to debilitate me. That summer seemed to be particularly hot. Up to that point in time I had always enjoyed the heat. I had loved hot baths, showers, sauna etc. Not any more!
From 1992 on the heat made me extremely fatigued and dizzy, and also brought on these awful symptoms. I mentioned these problems to my doctor. She had me do the touching my nose thing, hold both my hands out and close my eyes, and she looked into my eyes as I followed her hand up, down, right, left. (I will explain the purpose of these tests in greater detail at another time.) The day of that appointment it was a good day for me, and I had few symptoms. I received the figurative pat on the head. I mentioned these problems to her off and on for another year or so. I felt ignored. I felt that my concerns were not validated. I felt that she was saying, “This is all in your head, my dear.”
In the spring of 1995 I started to experience intense, sharp, shooting pains in my cheek. These pains always brought unbidden tears to my eyes. These pains moved like lightening bolts from my right temple into an area of my cheek and chin, repeatedly. Soon I had greater problems with imbalance. I started to veer to the right when walking. When I walked with someone I usually bumped into them if they were on my right. If I was walking alone on a sidewalk I would lose my balance when I suddenly found myself teetering on the edge of the sidewalk. I was always able to catch myself before I fell outside. I fall in the house, though, and I actually broke a toe twice. I could no longer stand up in the shower.
Then during the heat of that summer many of those old symptoms started to bother me again, plus a few more new ones. My jaw was tingly, the tip of tongue tingled, and I had tremors in both feet and my left arm. I started to know, without a doubt, that I had MS. (Years before I had worked for the MS Society.) I was determined not to tell anyone about my suspicions. I did not want my self-diagnosis verified in any way.
More of my symptoms and diagnosis will appear during the following days.
After years of experiencing those illusive symptoms I started to feel like a hypochondriac. After all, my doctor knew I was only seeking attention, so why shouldn’t I start to realize that my symptoms were mere phantoms. I had completely stopped mentioning any health difficulty that could not be quantified by myself first.
Then came a time when everything changed. I had an appointment to see my regular general practitioner when an intern was doing preliminary examinations for my own doctor. As I was talking to the intern she actually witnessed me experiencing the lighting bolts of pain. There was no ignoring or disguising the pain I felt at that time. It was so sudden and so very, very intense. She explained to me that this was called trigeminal neuralgia which involves a malfunction of one of the major facial nerves.
Trigeminal Neuralgia
A large nerve, the trigeminal nerve, originates deep within the brain and carries sensations from the face to the brain. The pain of trigeminal neuralgia is due to a disturbance in the function of the trigeminal nerve. Trigeminal neuralgia is also known as tic douloureux.
The intern had taken a class on MS the day before and was eager to practice what she had learned. After a thorough examination she reported what she had observed to my doctor. I was then referred to a neurologist. Just like that, I was finally seeing a neurologist. I did not realize until years later that I could have requested an appointment with a neurologist and my GP would have had to refer me. (At least in Canada, I am not sure how things are done in other countries. In Canada we cannot see a specialist unless we are referred by our GPs.)
On the first visit the neurologist calmly said, “Yes, you probably have MS, but I want to do some simple tests first.” One of these tests was a Magnetic Resonance Imaging (MRI).
Magnetic Resonance Imaging (MRI)
Minute details of the nervous system can be revealed in an MRI. MS produces small areas of abnormalities (lesions) on the myelin in the brain and spinal column. The MRI uses a powerful magnet to generate pictures. One cannot wear any form of metal during this test. Sometimes a contrast agent (chemical) is injected to enhance the MRI results.
The patient is first asked what kind of music they like, than they are asked to lie on a table. This table slowly enters a very small enclosed chamber.
Minute details of the nervous system can be revealed in an MRI. MS produces small areas of abnormalities (lesions) on the myelin in the brain and spinal column. The MRI uses a powerful magnet to generate pictures. One cannot wear any form of metal during this test. Sometimes a contrast agent (chemical) is injected to enhance the MRI results.
The patient is first asked what kind of music they like, than the person is asked to lie on a table. This table slowly enters a very small enclosed where the individual must remain very still for 15 to 30 minutes, while music plays for them. At times the table may move forward or back. This test is very noisy and the patient will hear thumps and bangs as various plates are inserted into the machine to obtain the correct pictures.
An MRI scan of the brain will usually show abnormalities if MS is present. Unfortunately, in up to 25% of early cases, the disease does not show up. MRI’s are not perfect, the neurologist will have to make a judgment call. MRIs of the of spinal cord are not usually done, but they are sometimes helpful in making a diagnosis.
The other simple test that the neurologist wanted to carry out on me was a spinal tap (lumbar puncture). I will continue with my story and explain about a Spinal Tap (Lumbar Puncture) on a later day.