The first few times I saw my current neurologist, he must have asked me at least half a dozen times to try to pinpoint when my symptoms first began. The best I could come up with was sometime in 2009. My earliest symptom, as I recall, was simply a strange sensation in the toes of my right foot. Specifically, the tops of my toes. They felt over-sensitive to the point of being almost painful. I thought this was odd, mentioned it once to my primary care doctor during a routine visit, and just figured it was one of those things. No big deal. Weird, but survivable.
Some time after that, I noticed one day that I didn’t seem to be able to flex these same toes upward. Or spread them apart as I’d always been able to do. Again, odd, but hardly devastating.
It wasn’t until sometime during 2010, I think, that the stumbling and tripping and general clumsiness led to several falls, one of which resulted in a split chin requiring stitches a few weeks before our youngest daughter’s wedding. I went to the doctor where I was told I had something called “foot drop”. A referral to neurology resulted in my first EMG/NCV – electromyography/nerve conduction velocity – study. The test revealed nerve damage mainly affecting the peroneal nerve in my right leg. They said I had Peroneal Nerve Palsy and it might get better. Or not. I should stop crossing my legs (I didn’t cross my legs).
It was in December 2010 that I first began having difficulty with steps. I seemed to be weak and was only able to go up steps that had a good solid rail for me to hold onto.
I was referred to physical therapy. After a few sessions, the therapist said there really wasn’t much she could do. Better get a brace.
The brace, also known as an AFO, for Ankle Foot Orthotic, holds the foot at the proper angle for a safe heel strike gait instead of the trip-causing toe first or flat foot gait. I held off getting the brace for several months because our insurance at that time would cover nothing of the expense. After a few more falls I relented.
Several more months went by and I noticed in 2011 that, in addition to the foot drop, I also seemed to be losing strength in my legs and hips. Stairs became even more of a challenge and falls more frequent.
By the fall of 2011, it became clear that the weakness wasn’t confined to the right leg. The left one was becoming involved as well. I returned to my primary care doctor who ordered another EMG/NCV study and referred me back to neurology.
The neurologist I began seeing, Dr. H – my current doctor – ordered additional tests including a lumbar puncture to check the CSF for signs of MS, and an MRI of my lower back to see if I had ruptured a disk. These tests both came back normal.
Dr. H then told us he suspected that I had something known as CIDP – Chronic Inflammatory Demyelinating Polyneuropathy. The most effective treatment for this is infusions of Immunoglobulin over several weeks. So that’s what we did.
After six weeks and no improvement – in fact, things seemed a little worse – we halted the infusions and discussed doing a nerve biopsy to confirm an inflammatory cause for this neuropathy. This would involve surgically removing a section of the right sural nerve. A consultation was set with a surgeon.
On April 14, 2012, two weeks after meeting with the surgeon, but before surgery had been scheduled, I fell again, this time fracturing my right fibula a couple of inches above the ankle. My right leg being the most damaged by the neuropathy, this was where the biopsy was supposed to happen. Of course, all was put on hold while I spent a few days in the hospital and then two weeks in a skilled nursing facility since I was not permitted to put weight on that leg. Weeks of recovery followed.
Finally, on June 15, 2012, the biopsy took place. Results took a month or so, but they seemed to indicate there were signs of inflammation. It was not absolutely certain, but Dr. H felt it was sure enough to begin treatment with an immunosuppressive drug called mycophenolate. However, he cautioned us that we still couldn’t rule out Amyotrophic Lateral Sclerosis – Lou Gehrig’s.
So, here we are in late August, 2012, and so far there has been no improvement. In fact, in the last several weeks, my left hand has begun having some signs of weakness.
Dr. H wants to do another, more extensive EMG/NCV test, as well as a brain and cervical spine MRI. We may also do infusions of high dose steroids to “kick-start” the mycophenolate. If after all this and no improvement, we may have to conclude this is ALS. Nothing is certain yet, but I’m mentally preparing myself.
Sorry for the long, rather tedious, post. I wanted to get all this medical stuff collected in one place so we can move on to other, hopefully more positive, things!! Thanks for listening.