I’ve been wondering how to tell this tale without my usually overly long narrative. I don’t know that there’s a way to do this without getting into to much detail. Apologies to those who may have heard bits of this story already… I do tend to tell my stories beginning with the history lesson aspect to it. Sorry… Let me break that pattern by saying that I’ve been dealing with an almost sudden loss of leg strength that we originally thought was the result of a pinched nerve. The loss of strength has left me needing to use a walker to get about. Last week Tricia and I met with a neurologist and his preliminary belief is that I have CIDP (Chronic inflammatory polyneuropathy), which is slightly related to Guillian Barre, something my mother contracted decades ago. Tuesday I go in for a Spinal Tap to find out if the neurologist is correct and then we’ll begin treatments. Best case scenario: the IV treatments will not only halt my decline but reverse the damage. A more likely scenario is that the treatments will halt the decline but I’ll be spending some time in physical therapy rebuilding my muscles and relearning how to walk normally. That’s the one paragraph version of my journey so far.
Here’s the extended version… One night last March I found that I couldn’t get to sleep because my right calf felt like it was on fire. Not “run out of the room I’m on fire” kind of fire, just a burning “what the hell is this” kind’a fire. I tried icy-hot and other treatments, but nothing worked and when I could fall asleep it was only for between 30 and 60 minutes. This went on for three weeks. It wasn’t long before I was reduced to a walking zombie.
See, in the three years since I’d moved to Florida, I’d avoided getting a local doctor and now I was paying for it. Tricia was beyond patient with me on this one. I talked to several coworkers and they suggested I go to a local Urgent Care place. That was the first good thing or good stroke of luck that I got. I had been reluctant to go to any walk-in clinic because I didn’t want factory “we don’t know you” medical care. That’s not what I got with the Aloma Urgent Care folks (on the corner of Semoran and Aloma, if you’re in need of quick professional care). They narrowed down my problem to a possible pinched nerve in my lower back, gave me a couple shots to take the edge off, prescribed some pain killers and gave me referrals to a GP and physical therapists.
Next was an MRI to identify whether there was a pinched nerve and consultation with a neurosurgeon. Neurosurgeon said that there might be a pinch, but no enough to require surgery, so we began physical therapy and a series of epidurals to see if they helped relieve the pain, which was now more a taut-charlie horse kind of feeling along my whole right leg from my calf up through my knee to my right thigh. That was April and May.
In June Tricia and I went on vacation and it was the first time that I noticed that I really had a serious loss in strength in my legs. I had a computer bag strapped across my shoulders and was carrying a small ice chest and walking up the streps in front of a friends home proved to be almost an extreme challenge. I also noticed that I’d been dropping weight and thought that my legs looked skinnier. When we got back from vacation I contacted my GP and he said that the weight lose was due to some medication he’d prescribed for to help with my blood sugar levels, nothing to worry about. But my physical therapists noted that the muscles that allow me to raise my foot at the ankle were pretty week and over the course of my visits appeared to continued to get worse to the point where I was no longer picking up my foot properly, called foot drop. I wanted to get another checkup with my neurosurgeon a bit ahead of schedule because I was continuing to note a loss of leg strength from both legs, in that I was finding it difficult to get up off the floor without a great deal of effort, but I was getting some resistance from the scheduling nurse saying that they don’t want to make another appointment until I was done with physical therapy. Done with physical therapy? So Eric and the other’s at Physiotherapy Works went to bat for me and called the neurosurgeon’s office directly and got a much better result because they knew what words to use.
So August 1st Tricia and I met with the neurosurgeon’s PA and she ran a few tests, took some notes and said that we should do another MRI to see if things had worsened and schedule for a nerve conduction tests and if things prove negative that we should schedule an appointment with a neurologist. The tests wouldn’t begin until the third week of August, but my condition was worsening at an accelerated pace. On the 9th I fell in the parking lot of a 7-Eleven, just trying to negotiate the goddam curb. I led with my left leg and then when I went to transfer the weight from my right leg the left knee buckled and I went straight down. When I saw my physical therapists the next day they said that I couldn’t wait until the end of August for the next round of tests and Eric got me in to get a second MRI on the same day. Then by the end of the day the neurosurgeon’s PA saw the results and said that there wasn’t enough changes to account for the continued decline and said that I need to make an appointment with the neurologist. It being August the earliest I could get in was September 4th.
Then I had a second fall taking out the garbage the following Monday night, August 13th, chip-fracturing my big toe on my right foot. I would fall another two times before I got my nerve conduction test on August 21st where the attending doctor was surprised that I was able to get around at all using a cane (which I started to use after the first fall). By the third fall Eric went to bat for me again and got me an appointment with a different neurologist a bit over a week before the other one. I intended to keep appointments with both neurologists just in case the first one didn’t come up with anything, but the first one did, so I cancelled the second one and tomorrow I go in for a Spinal Tap, to hopefully begin the end of this narrative.
I had dinner tonight with Tricia and i can’t say how lucky I feel to have her in my corner and how thankful I am that I’ve gotten such strong advocacy from my physical therapists and professional care from the others. I’m hopeful as always, but I’m also thankful that this journey hasn’t been alone or without merit.