As I said in my last post, I was one of the lucky 40% that get to experience skull splitting headaches as an aftereffect of my spinal tap. Basically, either the puncture hole in the dura is still leaking, or they just took out so much fluid that the fluid pressure inside the sack is too low. This includes not just the spinal cord but all the way up to your brain as well. When I laid down, I was fine. But when I would sit or stand, within a few minutes I would have the most intense and painful headache that I have ever experienced in my life. The fascinating thing was that when I would lay back down, the headache disappeared almost instantly. If only all headaches could be relieved so quickly and simply.
After the spinal tap, they suggest that you lay around and rest for 24 hours. With the headaches I was told to take another day and drink a lot of strong coffee. It didn’t work. Several days into it, I was still getting horrible headaches anytime that I would sit or stand for more than a few minutes. Doc Fundamental suggested a blood patch.
I was able to get away with working from home, which meant from bed in this case, without anyone knowing about the procedure. It wasn’t worth having to come up with answers as to why I needed a spinal tap. But I wouldn’t be able to work from bed forever, so I certainly hoped that this blood patch, whatever it was, would work.
The blood patch is pretty simple but ingenious at the same time. First, they stick a needle in your arm to drain the blood out. Then, they stick a needle into the cavity in your lower spine where the dura is punctured and pump your blood into it. This puts pressure on it, stopping the leak. Additionally, as the blood coagulates it forms a patch, sealing up the puncture hole in the dura. Eventually the body absorbs back the blood. Hopefully by then, the dura has healed.
It worked immediately! Like a miracle. I took it easy the rest of the day, but that was the last of the headaches.
A spinal tap, also called a lumbar puncture, sounds scary. However for most people, it is not anything to be particularly worried about.
Along with blood tests, your neurologist may order a spinal tap when they are trying to diagnose a neurological disease. In my case, Doc Fundamental performed the LP right in his office. The doctor will anesthetize the area around your lower back and have you sit on the table, leaning forward. He will then insert a needle into your spine, puncturing the dura mater and draining some of the spinal fluid from inside of it. The dura is a tough sack encasing the spinal cord and brain.
When someone has multiple sclerosis, it is believed that their immune system attacks the myelin coating on the nerve cells. When this happens, the breakdown of the myelin creates certain antibodies as a byproduct. The antibodies don’t stay in your spinal fluid for too long so if the spinal tap result comes back positive for these antibodies, it indicates that your immune system may currently be attacking the myelin. In my case, the results were not off the charts and horribly abnormal, but they did show the presence of the antibodies.
A positive result by itself does not mean that you have MS and a negative result does not clear you from it. There are significant type 1 and 2 errors for you stats folks. It is just one more piece of evidence leading towards a diagnosis, one way or the other.
Post puncture they will have you lay still for a couple of hours. You will be instructed to drink a lot of fluids and to take it easy for the next 24 to 48 hours. However, a lucky 40% of us develop severe headaches when we sit or stand upright after the procedure. Unlike the EMG, I’m not sure that this one does beat a sharp stick in the eye. Thankfully, there was a creative treatment and that will be the topic of my next post.
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.
I have two neurologists and their styles are very different. For this article I will focus on my first, the subject of my prior post that we will call Dr Fundamental. We will get to the second one shortly.
Dr Fundamental’s routine is typical from what I have experienced with other appointments. If you have apprehension about seeing a neurologist, relax. It’s not painful nor do you have to work hard such as you might at a stress test. The beginning of the appointment was just a conversation. Doc F asked me many questions about my experience and history and took copious notes. Being old school, his office was lined with bookshelves that must have had a thousand books on them. No doubt, he has read them all.
We then started a physical symptom check.
Stand up please. Stand still with your eyes closed. Touch your nose. Walk down the hallway. Now walk back. Walk on your toes. Walk on your heels. Walk heel to toe, heel to toe. Alternating hands, touch your nose as fast as you can. Squeeze my hand. Push my arm. Pull my arm. Look at the dot on the wall. Staring at the dot, tell me how many fingers I have up (checking peripheral vision). Now follow my finger. Tell me what number you see in this picture of colored dots. Lie down please. Close your eyes. As I touch you with this safety pin, tell me if it is the sharp or dull end. Dull, sharp, sharp, dull, sharp, dull, dull, sharp….. Say yes if you feel the tuning fork vibrate as I touch you with it. Take your left heel and run it up your right shin. Now reverse. Doc F scratches a key up the sole of my foot to see if it reacts and curls up (the only part of the exam that isn’t comfortable).
What was the result? I passed with flying colors. We now had two reports of pretty ugly MRIs but with virtually no physical symptoms at all. Dr Fundamental said that there was a disconnect but that it happens sometimes. He does occasionally see patients that have pretty clean MRIs but massive symptoms, and others with bad MRIs that appear to have no symptoms at all.
I fell into the latter category. The next step was to figure out what had caused it.
The MRI of my brain came back and it wasn’t so hot. They found multiple lesions. This, combined with the demyelination in my spinal cord from my neck MRI, put concern on the table that this could be something serious. And yet, I had no symptoms apart from the occasional slight tingle in my leg. My primary care physician referred me to a neurologist.
When describing the neurologist that he was sending me to, my doctor kept referring to him as “very fundamental”. He repeated this term over and over and to this day, I am still not 100% sure exactly what that means. The closest to an explanation that I got from my Doc was him saying that a young neurologist would just see the MRI report and throw me on MS medicine. However, the neurologist that he was sending me to was “very fundamental”. OK. I guess.
I actually really liked Dr Fundamental. The concern was that he was approximately 70 years old. The pro with that is that he was “very fundamental”. I’m going to relabel that as old school. There were several cons with this, however. First, I would hope that my disease treatment will outlive him. Second, he had his own issues like canceling one of my appointments because he had to go in for a procedure of his own. Lastly, were occasional comments like “I’ve prescribed the same medication for MS for the last twenty years”.
Don’t get me wrong. I think that Dr Fundamental is great. I would refer anyone seeking a general neurologist to him and I am very thankful of the treatment that he gave me. That’s a topic for the next post.
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.
While I was waiting the six weeks for my nerve induction test (EMG), I developed a sore neck. It was like a stiff neck that you might get from sleeping in a bad position except that it didn’t get any better after a few days of a heating pad like it should have. The likely culprit was my baby daughter and the way that I was holding her to feed her a bottle. In the end, this little culprit turned out to be a savior.
My doctor prescribed physical therapy for me. I have mixed feelings about the PT. Learning a few exercises primarily for my traps was not a bad thing. However, it wasn’t much more than going to a personal trainer for a few exercises and getting a massage. The massage of my neck felt good, but I question the long term benefit of the treatment. After a few weeks of repeating the same exercises that I could easily do at home, I did just that and stopped going.
Then one day while I was holding my daughter and feeding her a bottle I noticed something very peculiar. When I turned my head down and to the left to look at her, I felt the tingle in my thigh. Every time that I moved in that direction the same thing occurred. I mentioned it to my wife who mentioned it to our doctor. “Have him come back in to see me immediately”.
I thought that I had solved the mystery. It must be that I have a pinched nerve in my neck. That might explain both the perpetual stiff neck and the tingling leg. My doctor disagreed. He explained how it was unlikely because the nerve fibers going down to the leg would be buried well inside of the spinal cord at the neck. A sensation in my arm or a pinched nerve in my lower back might make my idea more plausible, but not a neck-thigh combo.
I had no other symptoms at all and was basically very healthy. My doctor suggested sticking with the PT and watching it closely to see if it gets any better or worse. Then, as I was walking out of his office, he called me back. “Let’s not wait. Let’s get an MRI done and see what’s going on in there”.
We will call this the case of the mysterious tingling leg, part 1.
Almost a year went by without any further symptoms apart from just feeling not quite as agile as I used to be. Then one day, I started to notice a tingling sensation in my leg. It wasn’t painful. It was a similar feeling as to how your leg may feel if you have sat on a toilet seat too long. The sensation was in the front lower part of my left thigh, a little above the knee. It only showed up occasionally. If I ran, it tingled. If I walked very quickly to cross the street before the light changed, it tingled. The strongest sensation occurred each morning when I would climb out of bed. In each case, the tingling would cease as soon as I stopped the movement.
The tingling was so slight and intermittent that I didn’t concern myself with it until a month later when I had a conversation with a friend. My friend had recently had a heart attack and was sharing his story with me. He had all of the classic symptoms such as a tingling numbness in his arm and the feeling of an elephant sitting on his chest. It got me thinking about my leg. Was it possible that a tingling leg could be the same warning sign as a tingling arm? Time to see a doctor.
My doctor ran me through a battery of tests including an EKG. Everything looked great. My heart was fine. The doctor suggested that I schedule a nerve induction test to make sure that there wasn’t a problem there, which I did for six weeks later.
I went back home, very relieved, expecting whatever had caused the tingling leg to go away on it’s own.