It has been an interesting year for me and I have decided to share that journey because we need to talk about how vulnerable we are and about how our health care systems are limited in their capacity of diagnosis and treatment.
2 years ago. . . .
About 2 years ago I started to notice what I could only describe as “stress” starting to affect me.
Occasionally I felt “weird” and my body did little things that made no sense.
I brushed it off as being out of shape and getting older and told myself that at the very least I needed to get out walking more and spend less time sitting around.
I changed to a sit stand desk, I started to walk a lot more, I joined regular fitbit challenges and I was trying to be mindful about what I ate.
It was a hard year, in terms of my stress, and I had taken on a lot at work, in my personal life and with volunteering. I continued to find things more often leaving me drained and I wrote it off as stress, age and not taking care of myself. Seemed realistic that maybe mid-forties is when I would finally discover that I was no longer a teenager?
One year ago . . . .
One year ago on a family vacation away from our brutal winter I found myself unable to relax very well and feeling like I was somehow losing my grasp on everything in my life, it was like I was feeling tense when I wanted to relax. We were having great family moments and on the outside I was enjoying it but on the inside I was feeling messed up. It was our classic family vacation filled with lots of action so I had no time to dwell on these feelings, but I knew it was messing with me.
When we came home from that vacation and I returned to work, I felt like I ran into a brick wall. My absence had generated a pile of work and like never before I felt like there was no way I could catch up. I felt like I was drowning in responsibilities that needed my immediate action and demands to set out the path ahead as well.
I hadn’t recently changed jobs or clients or staff. This wasn’t my first vacation to return from with chaos and crisis awaiting me. Somehow I had changed in my capacity to cope.
My body began to revolt.
I started to wake in the morning with numbness in my hands and arms. I could feel parts of my body vibrating, most of the time just a subtle vibration but it was there. I started to have periods where I couldn’t find my words and I would stutter stuck mid-word while my search function hourglass spun searching for the words.
It was frightening and thankfully my wife urged me to see my doctor.
My doctor ordered a lot of blood-work, put me on the list for an MRI and referred me to a neurologist. I went back to my normal routine and pushed myself to try to catch-up with work and everything else I wanted to accomplish. My body continued to reveal new mysteries in odd symptoms. My hands were now having issues with coordination and things felt funny and at times it felt like it was burning inside my hands.
The weeks that followed were exhausting and I will spare myself the effort of typing the details and you the effort of reading them.
Bloodwork = b12 super low on the verge of deficient, nothing else
Neurologist = nothing, too much coffee? anxiety? nope. nothing wrong
MRI = spots, nothing going on to warrant a diagnosis
Second neurologist = nothing wrong with you neurologically based on our tests, but obviously something wrong with you. sorry, its a waiting game that either gets better or worse
chiropractor = your body is not responding as it should. see a new neurologist, suggests check celiac disease (I do. gluten load, celiac test negative)
By this point I have all kinds of issues with numbness, spasticity, spasms, twitching, itching, pain and weakness all over body at different times. Much of it goes away and I get short breaks were I have few symptoms.
My doctor continues to explore options as he thinks of them but as we come to Christmas of 2017 we still do not have a diagnosis and there is no sign of the symptoms stopping.
In January of 2018 I get briefed on my MRI from December. No diagnosis but my doctor immediately books my next MRI for the fall. For the first time he uses the term”Multiple Sclerosis” in the conversation as something we are trying to eliminate as the cause of symptoms. I ask for a copy of the MRI report (see below) and we agree to connect again in the future if anything changes. I honestly do not really know what the MRI report means and I admit when I got it at my last appointment I didn’t ask questions because I assume no diagnosis means that there is nothing of value there.
Today my symptoms include regular/occasional leg drops where one of my legs will give out. My hands routinely struggle with certain dexterity issues and I routinely wear wrist braces to bed so that my hands don’t curl in. I have random numbness in various places from my face to my toes, tension or tugging at the muscles. There are other symptoms too but lots of symptoms I have had are also gone at the moment so I am happy with that. I am on no medications and other than the legs giving out most people have no idea when I am struggling with some oddity.
Sometimes I wish I had a diagnosis so I could go to a support group or something so that other people who have also had these symptoms can validate that its not all in my head. I regularly find myself worrying that I have some psychosomatic condition and that by worrying about a diagnosis I am making it worse. I have gone from feeling “normal” and focusing on life to getting distracted when my body doesn’t behave normal. I like doing things, not worrying or thinking about health stuff.
It’s very frustrating to try to pick something up only to struggle to get your fingers to actually pick the item up and then to realize people are watching you as you seem to be almost playing with the item.
It is so annoying to regularly drop things because apparently my hands either didn’t grip something adequately or they let go, I never know the cause as it happens so sudden and I didn’t think about picking something up I just did it.
I have a whole new appreciation for people struggling with invisible conditions. To the outside world you look completely normal but on the inside you can feel like you are falling apart. It’s not that you want sympathy or pity or any number of other things people might assume, you really wish you could just be better or even normal again.
End of rant. Thanks for reading.
“There are relatively extensive punctate areas of increased T2 signal intensity in the subcortical white matter of both hemispheres. They are nonspecific in etiology.
There are two more linear areas of increased T2 signal intensity in the genu of the corpus callosum that are somewhat more concerning in appearance. They are insufficient for a definitive diagnosis. “