Nov 30, 2010
Here is the story I wrote up for some of my close friends who have little to no knowledge of MS:
What's Been Happening With Bob's Health on Friday, November 12, 2010 at 5:12pm
This is a long and kind of convoluted story. In recent times, I was going to an orthopedic surgeon because I thought I messed up my left shoulder. I had this burning shooting pain that shot down the triceps and into my ring and little finger. Not fun! Lots of x-rays and an EMG on my left arm, and what did they find? Carpal Tunnel. Not an explanation for my pain. So I make an appointment with the Physiatrist (a rehabilitation physician.) As I'm waiting for the appointment date, I lost most of the vision in my right eye. It ached for a few days and then someone pulled down a shade. I lost the ability to see the difference between shades of red and had to cover my left eye to see my laptop. Off to the eye doctor. He looked in my eye with a slit lamp and an ophthalmoscope . He then tried to joke with me by saying: “You have one of those problems where you can't see anything, and neither can I. I'm pretty sure you have Optic Neuritis (ON). You need to see a Neuroophthalmologist. We need to make sure this is not the first sign of Multiple Sclerosis (MS.) We see this quite a bit .” Outside of the hospitals, there are two Neuroophthalmologist in the Denver Metro Area. One was in his late 60's. I went to the other one.
It took a few weeks to get in to see him in Englewood. Once I got to see him, it was pretty much the same thing. He didn't see anything in the eye and by that time, my pain was gone and vision was improving. He said, “Yes, but there still may be damage. You are better off with a course of IV steroids. Three days of IV Solumedrol at home. MRI on the second day of the IV and a VEP (Visual Evoked Potentials) test a couple of weeks later. Another appointment for results. One lesion in the cerebrum of the brain. The VEP showed damage to the Right Optic Nerve. Doctor tells me, “Your vision may continue to improve over the next seven to nine months, but don't expect 100% improvement. Since you only have one lesion, it isn't a big deal right now, but we will have to watch it. If there were two lesions, we'd be treating you for Clinically Isolated Syndrome (CIS.)” He explained that CIS is the term used for MS when you have only had one 'attack.'The doctor did give me a prescription for Flexeril to try and help with lower leg spasticity at night. There was a small technical problem with the MRI, where I couldn't seem to lie still enough for the study and I created some movement artifact.
Now, MS lesions are not like tumors. Think of a lesion as a small nick in the insulation on a piece of wire. The body is kind of flaky with how it handles damage to nerves in the brain the wiring on the brain is made up of axons that are covered with insulation called Myelin. The nick is in the Myelin. Every nick slows down the signals moving over those axons. This can mean changes in the way things feel (like the pain in my left arm and feet) or the speed data moves in the brain (left eye to optic cortex ~98mS right eye to optic cortex ~125mS.) Sometimes the brain reinsulates (remyelination) the axons, sometimes it doesn't. Sometimes the axons die and leave a hole. Sometimes the brain just rewires itself (neuroplasticity.) Anyhow, back to how I got here.
Well, Englewood is a long trip, and the Rocky Mountain MS Center has a clinic at the University of Colorado Heath Science Center (CU HSC) in Aurora. It about 25 miles closer. So, I ask for copies of my records and made an appointment with the Neurology Clinic. Went to the appointment, brought my records and a copy of my MRI on DVD. Met my new Neurologist. He thanked me for bringing all the records and did a neurologic exam then he re-read the MRI. He came back and recommended we watch and wait. We would wait about 6 months and do another MRI of the brain. OK with me. He asked about doing a Lumbar Puncture (LP or Spinal Tap) to see if there were any antibodies being produced in my central nervous system that were not being produced in my blood. The test was for Cerebral Spinal Fluid Oligoclonal Bands. 90% of people with MS have these bands.
A couple of months later as we were getting ready to head to the United Kingdom on vacation, I get an ache in the right side of my face. So I do what most people would do, I ignore it. That is until that ache turns into a hit from a cattle prod. Not a good thing. It hit whenever it wanted, and could make me drive off the road. So what do I do? I ask Dr. Google. Google says it is a neurologic condition called Trigeminal Neuralgia. Google says it is caused by demyelination of the fifth cranial nerve (CN5.) So now I see the key words: Cranial, Demyelination, and Nerve. I call the Neurology clinic and make an appointment. (OK, I'm a little slow. I did eventually get the hint.)
Back to see my Neurologist. We did the question and answer thing, then he proceeded to twist my lower jaw and poke around inside my mouth for a while. He announced that he didn't see any jaw or TMJ issues, so he thought it was Trigeminal Neuralgia. Dr Google was right. So I leave with a prescription for Tegretol and instructions on how to titrate the dosage up. Maybe I can be pain free in the UK.
The UK trip was great. The medication was beginning to work. My feet wore out pretty quickly. The solution was sit when I could and some “off my feet time” in the afternoon. It was still a great trip.
When we got back, I scheduled my second MRI for the beginning of November so it would be out of the way before the holidays. There was movement artifact on the first MRI, so this MRI came with a healthy dose of Valium.
The 2nd MRI had 4 more lesions than MRI #1. The MRI #1 used a 5mm slice size and the MRI #2 used a 3mm slice size. The Doc said the lesions may have been there before, but just got missed or they could be new. He said my Lumbar Puncture was negative for the bands that 90% of MS patients have, but I could be in the 10%. There are 400,000 People with MS is the US. That means 40,000 of them don't have these bands.
Current Diagnosis: Probable RRMS
He said I have had two well documented clinical attacks that were about 4 months apart. He said I damaged the right optic nerve and optic tract with the ON. So here is the hard part. Watch and wait for 6 more months and have MRI #3 to see if something is going on, or start a Disease Modifying Drug (DMD) and possibly prevent new lesions from appearing and never know. I decided on the third option. I would go home and discuss it with Geoff and call the doctor back. There was no need for me to make this decision on my own or feel rushed.
Got home and we talked. "What happens if I get ON in the right eye again?" "Worse, what if I get ON in the Left Eye and now have left and right neurovision issues?" "Will I be able to work with those kind of vision changes?" "Will I be able to drive?" "What about our small ranch?" "What happens if their are cognitive changes?" I get paid for how my brain works. I solve problems. “ What happens if I can't solve problems? “ Can we afford to loose my income? What was it the first doctor said? Right, if there was more than one lesion they would have treated it as CIS. Now I have had two attacks and more than two lesions.
So we were talking through this. Needles don't really bother me. I have been vaccinated against stuff most civilians don't even want to know about. So the question really comes down to Risk vs. Benefit vs. Cost.
With my drug plan, Copaxone (one of the DMDs) is $1.50 a day. The Docs say Copaxone reduces the risk of a relapse by 30% year on year. My research says that if you stay on it, you have a pretty good chance of really limiting your disability score at 10 years. I only have one good optic nerve/tract left. No more redundancy in my vision system. There is just too much to do around the ranch. I need to prevent ending up with mobility issues. (Turns out the drug manufacturer will help with the copay up to $50/mo. So my Copaxone will cost me nothing out of pocket.)
We decided that at that low a cost and the potential for (who knows what) to go wrong, it would be best for me to go on a DMD. I've called the Neurology clinic to let them know. The risk just seems to out-weigh the cost of the DMD. I think of it as a form of insurance.
So, for the better part of this year, I have had this mysterious invisible thing happening. The wiring from the right eye to the brain has issues. Sometimes I can't see text on the TV or subtitles. My feet and leg burn daily. My right arm flares up now and then. Sometimes I loose words. I'd like to think it was a psychological issue in my head, but it turns out it is a break down in the wiring in my head.