In the last installment, I wrote a bit about how Mandy began to exhibit physical symptoms which, of course, would eventually be diagnosed as MS. My purpose in taking you through the process of MS... from initial symptoms to eventual diagnosis is simple -- I want you to buy into the life. I want you to consider, on a gut level, not my life, but yours... and how it can be turned completely inside out when either you or someone you love says simply, “Hmm, my arm feels funny.”
In the last post, I left off at the point where Mandy’s first neurologist made the statement that he didn’t think Mandy had MS, that he really didn’t know what she had, and that we should just go home and call back should the symptoms ever return.
Now, to continue...
We humans can, whenever convenient, exhibit rather short memories, because within a week or two, we had put the whole episode behind us, chalked it up to some never-to-be-explained medical phenomenon, and were back on track enjoying our togetherness. For about four weeks, that is, until the monster decided to peek out of it’s hole at us once more.
The symptoms started the same. Weak right arm, then left, then right leg, then left leg. Very symmetrical. Not at all what one would expect, symmetry not being the hallmark of MS exacerbations. Regardless, we immediately called the neurologist and, a few weeks later, quick appointments being almost impossible to secure where we live, we found ourselves back in the doctor’s exam room. This time, in addition to repeating the first tests, he also wanted to do some new ones, including one where he inserted electrified metal needles into Mandy’s arms and legs, turning them within the muscles to gauge their reaction. Suffice it to say that Mandy was not happy, nor was I. But, being innocents, we went along. Finally, he declared that he wanted to perform a spinal tap.
A spinal tap. Now that scared me. Moreover, he wanted to do it right in his office. Says they do it all the time. What do we know? So we agree and a few days later we drive back out to his office where Mandy receives a spinal tap. I stayed in the waiting room, having been told that someone would come and get me once the procedure was complete and Mandy was comfortably resting. Thankfully, the procedure went well. We left soon afterwards, but not before making an appointment to drive back in a few days for the results.
And what results they were. Arriving on time for our appointment, we once again waited in the little room for the doctor. When he entered he made his pronouncement. The spinal fluid was clear. This proved beyond any doubt that Mandy did NOT have MS. Absolutely, positively, NO MS.
What did she have? Since she wasn’t really exhibiting any symptoms right now, he couldn’t really tell for sure. Sounding like a repeat from our first go-around with him, the doctor said that if Mandy should ever experience a re-occurrence of her symptoms, then we should come back and he would run all of the tests again. Thousands of dollars worth of test, I might add.
Mandy’s first symptom, a numb arm happened in the summer of 2003. It was now sometime around October and the only answer we had to date was a definitive “I don’t know, but it’s not MS.” We wanted a second opinion, having by now begun to question this neurologist. My father suggested that I take Mandy to Johns Hopkins University in Baltimore. I agreed and so we approached our family physician with the request that he do whatever he could do to get us an appointment there. He too, was dumbfounded and not a little incredulous at the neurologist’s findings. As luck would have it, he was successful and soon we found ourselves driving over the mountains into Baltimore and to a world-class medical facility.
It felt different there. First of all, it was busy. Lots and lots of people, most with a whole host of ailments... many that appeared far worse than ours. Another round of paperwork... less this time since they were smart enough to have sent a packet for Mandy to fill out and return well before her appointment date... and after the customary wait, we were escorted into the lead neurologist’s office.
The doctor’s assistant, herself a well-respected neurologist, joined us immediately so that she would perform the first patient/doctor interview. She was very nice, very professional, and -- we could sense -- very good at what she does. When she finished, the lead neurologist came in, introduced himself, read through his assistant’s notes, and began to question Mandy a bit more.
When he finished, he began to perform some of the same neurological tests that the other doctors had done. He watched Mandy carefully, noting the way she walked, checked her reflexes, even used a tuning fork to determine the extent of nerve damage or lack of nerve response. Finally, it was time to view the MRIs with the doctor. The same MRIs, I might add, that Mandy’s other neurologist looked at when he decided that she positively did NOT have MS.
As before, but in a much more professional manner, the doctor and his assistant lined up a few of the MRI films on a lighted backboard. Then they asked us to come over and view the films with them. I’ll never forget how he looked at the films, then looked at Mandy and I, and then asked quizzically, “Did you ever see these?” Of course, we said, and told him about our previous experience, as well as the diagnosis.
He listened, then pointed to some white spots on the film... white spots that are in Mandy’s brain. “Do you see these white spots here... and here,” he asked. Of course we did. Then came the words that we knew we would someday hear -- “This is MS.”
[continued next post]
Published On: March 24, 2008