As I mentioned in my last post, Doc Fundamental suggested that we get a second opinion from Famous Doc B. The four months that I waited for an appointment went relatively fast. I was very busy with work and my family. I was also spending a lot of time reading everything that I could get my hands on related to multiple sclerosis and other similar diseases. But as my appointment approached I started getting more anxious to do something about this probable MS. After all, it had been a year since I had first seen the doctor about my leg.
I had read a lot about Famous Doc B prior to my first appointment. My wife and I agreed that if we liked her, we would see if she would take me on as a patient instead of just providing a second opinion.
Famous Doc B was wonderful. Going forward, I will refer to her just as my ms doc.
My ms doc started with the usual discussion of my history and the typical physical tests. Then we went into another room to analyze my MRI images on a computer screen. Doc Fundamental had relied on the written reports by the radiologists of my MRIs. My new ms doc read those, but analyzed the images herself. She explained to me and my wife what we were looking at and the significance of each of the lesions, taking into account the differences between viewing them from the MRIs done with contrast and done without, and what that means.
Doc Fundamental is a good general neurologist that I wouldn’t hesitate to refer someone to. However, my new ms doc had dedicated her whole career to studying the progression of multiple sclerosis. Her answers to our questions and her analysis gave me and my wife enormous confidence in her.
And then came the diagnosis that I knew in the back of my mind had been coming for a while. My ms doc said that I have multiple sclerosis.
We discussed the options for treatment and her suggestions (a topic for the next post). My wife asked her if she would be willing to take me on as a patient and she said yes. I was thrilled. My wife cried. Not because of the diagnosis; we knew that was coming. But because I was going to have such a great doctor by my side for the upcoming battle.
As a footnote, it was a lucky call choosing my ms doc over Famous Doc A for the second opinion. Famous Doc A will only do second opinions now and is not taking on any new patients at all.
There are numerous diseases that can mimic multiple sclerosis. An important aspect of forming a diagnosis is to first make sure of what you are not dealing with.
My blood test results came back showing positive readings for both lupus and lyme disease. Talk about mixed feelings. I did live in the northeast during the era of lyme disease so I could have been exposed. In fact, there were moments when I was hoping that the lesions were decades old scars from exposure to lyme. But lupus?
I looked up lupus online. Like MS, it doesn’t have to mean the end of the world. However, while there were countless articles online about new drugs and developments in the fight against MS, the front against lupus seemed a little quieter. I was in the very strange place of having to hope for one horrible disease over another.
Dr Fundamental wasn’t buying it. He examined me again and said that he would be shocked if I had lupus. He was also skeptical of the significance of the lyme disease result. He sent the report off to his friend, an infectious disease specialist. That doctor concurred that the lyme disease result was suspicious and extremely unlikely to be the cause of my lesions.
For the lupus result, Doc F wanted a recount. He sent me to have blood drawn again but this time he had it sent to a different laboratory who’s specialty was in rheumatology tests. The result came back negative. Doc F was right and it seemed that I did not have lupus after all. Whether that was good or bad was really hard to say. At this point I was anxious to figure out which devil it was that we were dealing with.
It was back to the list to see what else we could check off.
There is no test for MS. It would be great if you could give a little blood or pee in a cup and have the result come back from a lab as positive or negative. Unfortunately, it is not that simple.
The standard definition is to have evidence of lesions at two or more locations, at two or more points of time. I have found that the calling of the diagnosis can vary a bit from doctor to doctor. Some are more conservative with making the diagnosis than others. Some are also more experienced with MS and may be more skilled at reading an MRI (especially one done with contrast).
With Dr Fundamental being “very fundamental“, I expected him to be on the conservative end of the spectrum. At the end of my appointment he explained our process to follow while we waited to see what happens. There are numerous diseases that can mimic MS that we needed to rule out. Luckily, many of these have a test for them. With each result that we would get back, either the case for or against it being MS would be strengthened. Eventually we might have a preponderance of evidence supporting a diagnosis one way or the other. That is, if the tests hadn’t identified any other cause.
Next step: Donate a little spinal fluid and more blood.
My EKG was fine. My EMG was fine. A blood test showed that my cholesterol was starting to creep up, but basically it was fine. I went back to my doctor with the expectation that the MRI that I had just had of my neck would also show that everything was fine. I expected a continuation of the unsolved mystery of my tingling leg.
Except that it wasn’t fine. The MRI revealed two problems. Somehow I had developed arthritis in my neck and the second had to do with my nerve cells. The doctor said that some of the cells “had changed”. I wasn’t quite sure what that meant. He grilled me repeatedly asking if I had suffered any injury to my neck that could have caused this. I hadn’t. The report suggested that I have an MRI performed of my brain as well and I left the doctor’s office to go schedule that.
On my way home, I read the copy of the MRI report. It made reference to evidence of something called demyelinating disease. Having no idea what that was, the first thing that I did when I got home was to go online and look it up. Myelin is a sheath or coating on the nerve cells. With a demyelinating disease, this myelin is damaged. It could be caused by a variety of things such as exposure to certain chemicals or genetics. In the case of MS it is believed that an individual’s own immune system attacks the myelin. This creates problems because the myelin plays a key role in the conduction of the electrical signals through the nervous system. Damaged myelin inhibits the flow of the signals and can cause sensations (like my tingling leg), lack of coordination, problems with eyesight and numerous other symptoms.
Now we knew what was causing the tingling leg. The next step was to figure out what was causing the demyelination and what, if anything, to do about it. It was back to the imaging center for an MRI of my brain.
A couple of weeks later I went in for my first MRI. This one was of my neck and it was not a bad experience, really. It was a little loud but they supplied me with earplugs. Luckily I am not claustrophobic so laying still in the small tube didn’t bother me. Truth be told, it was actually quite comfortable and relaxing. No results yet; that would take some number of days.
While the MRI was comfortable, the nerve induction test (EMG) was anything but. In my first two years with the disease, there have been only a few incidences of physical discomfort. The EMG was the first.
The first half of the test was fine. The doctor stuck needles in my legs connected to wires that measured the electrical signals going through my nerves. The second half was no fun at all. With the needles stuck in me, the doctor pressed a metal electrode against different spots. Pressing it hard against my skin was uncomfortable. But that was nothing compared to when he hit a button on the machine and it sent electrical shocks through my leg. Progressively dialing up the intensity of the shocks, the last few at each location came with a warning from the doctor that “this one may be a little uncomfortable”. That’s for sure.
The good news was that the EMG results were fine. My nerves apparently responded properly to the shock torture. Again, I went back home relieved, expecting that the slight tingling would probably just go away on it’s own.
It was almost exactly two years ago from today. I remember it distinctly because I was out of town at a conference for my work. I was walking down the sidewalk with several colleagues and noticed that my walking felt a little strange. It felt almost like I had been drinking, but I hadn’t. I didn’t think much of it at the time and chalked it up to reduced agility as a result of being out of shape. I recall thinking to myself how I really needed to make an effort to start working out again.
Two years later, this is now the normal feel of my walking and I know that it is a result of my MS. Of course, I still need to make an effort to get into the gym more.