Parts of this are taken from my cookbook, “Cooking with Author-Chef (Not Iron-Chef) Brian K. Larson, which was released last month. I tell my cooking story and my challenges in the kitchen. But one of the reasons for being gone, other than slicing my thumb two weeks ago, was these continued neurological issues. I’ve been very fatigued as of late and going to many appointments chasing the lead to what ails me. The section below describes a small part of all this that’s been ongoing for many years. Well, after all these years, I might finally have a firm diagnosis, but it’s not what you might think. After my neurology appointment last Thursday, I have been told it’s not Multiple Sclerosis or MS, and I’m confidant that my new neurologist is on it. But, you’ll have to tune in tomorrow for my next update to see why.
In 2015 I discovered I had a herniated disk, accompanied with sciatica on my right back and leg. It was so painful; I was no longer able to work. I literally crawled on my hands and knees from the car to our house. Then, more symptoms began coming and going. I had strange muscle fasciculations across random parts of my arms and legs. It would start under my left shoulder where you could visibly see several muscle groups undulating under my skin. My hands would shake and I began tipping backward when standing. That was it. Time to see a neurologist and another battery of tests. This time, they did more tests. I had an MRI of my brain and back, I had an electromyography or EMG, which was not a bit fun, let me tell you. They jab you with probes at the base of an arm or leg and then jab another at the opposite end. Then they send pulses of electricity at different amplitudes to measure how long the signal takes to travel across the nerves.
The results were, again, showing something abnormal. But it wasn’t anything the neurologist recognized. I went to a movement specialist and they confirmed there were unusual things going on. We ruled out all the bad things, such as Parkinson’s and ALS, but Multiple Sclerosis was high on the radar, until the MRI results came back. Again, the MRI was abnormal, but not for MS. They were still puzzled that I didn’t have any plaque on my brain. Well, I did have plaque. However, it was inconsistent with what is common with MS.
I still have not been diagnosed as yet. It’s still a mystery. One doctor says it’s Functional Neurological Disorder, another says Conversion Disorder due to a childhood trauma, which doesn’t fit, either.
There is a couple thing that links this all together and I am working with one doctor that is leaning on an MS diagnosis. That is, people with Epstein-Barr have developed this autoimmune disease. When I was seventeen, I contracted Mononucleosis, which then caused the Epstein-Barr antibodies. These are permanent in your blood. It’s part of the Herpes virus, so there’s no cure.
Another interesting thing to note is that it’s been well documented that about five percent of individuals that have MS, don’t have plaque showing up on an MRI. My new doctor says, there’s only one disease where symptoms come and go over time, and that’s MS.
Not that I’m jumping for joy that it might be this, I’m just happy to finally get some kind of diagnosis that makes sense.
One more thing that I must say and that’s that, I’m one lucky man to be married to my soulmate. She is my strength and has stayed by my side through it all. There are many times where one spouse gets sick and the other leaves, not wanting to spend their lives with someone that’s disabled. So, the spouse is left to take care of themselves.
Tune in tomorrow for Part 3 of Why I’ve been MIA…