The purpose of this blog is to provide some general information about CIDP, to share my own progress with family and friends and, hopefully, to provide some answers for others out there who find themselves with a similar diagnosis. My first post addressed the first goal - What is CIDP? This post is more personal in nature and is aimed at the second, though may be interesting to the third as well.
I was diagnosed with CIDP in August, 2015 though I started showing symptoms in March or April. I kept things pretty quiet for a long time and there are still many friends out there who do not know what is going on. I am not ashamed of this or anything, just didn't quite know how to go about broadcasting it. Family, co-workers, friends who live nearby and some of my closest friends know a little more, of course. The cat was let out of the bag a little on Facebook a week or two ago, so I've decided to go public.
In the beginning... there was pain in my calves. Both calves - weird, right? I figured it was from walking too much wearing ice cleats on my boots (the winter of 2015 was particularly long and brutal in Nova Scotia). After a month or so (I'm stubborn) I went to the doctor who thought it was likely an Achilles issue. She suggested icing, Ibuprofen and physiotherapy. I started with the first 2. A few weeks later I noticed that I was unable to stand on my tip toes. This prompted me to seek out physiotherapy. The initial thinking there was that it was an issue with my soleus or calves. We tried dry needling, heat, stretching and some strength exercises. Over the next 2 months or so I went twice a week with no improvement. In fact, it got worse. My balance was suffering, my feet began to 'tingle' and my muscles were getting weaker. It was also painful to walk any distance.To say it was frustrating was an understatement. Eventually stairs became more and more difficult and even stepping on a piece of gravel would send me teetering. I probably should have started using a cane at this point, but I'm stubborn.
In July I went back to the doctor and had some blood work done. Turned out I was low in B12, which we thought may be the culprit. I also went and got some braces to help with walking. No one had any clue about what was going on and, other than my vet friend, seemed reluctant to send me to a neurologist. In early August my physio asked me to see his chiropractor colleague. This is when things started happening. The chiropractor met with me, did some tests, filmed me walking and doing stairs, then went to talk to my physio. They came back and said that I really needed to see a neurologist and that there was nothing they could do to help me at this point. They sent a letter to my doctor about this. Now, of course, my doctor was on vacation the following week. By this point I had given in and was using a cane. This is also when I decided to stop driving given the absolute shock expressed by the chiropractor when I said I drove to the appointment.
When I finally got in to see the doctor she agreed that it was time to see a neurologist. She called him with me in the office and did a few tests with him on the phone. This was a Friday - he booked an appointment with me for the following Monday. I also had additional blood work done that day and booked a CT scan for the following week in case it was a spinal issue.
The neurologist appointment found me electrocuted and prodded for an EMG and nerve connectivity test. He noted that there was demyelination and some axonal damage and mentioned he suspected CIDP. He scheduled me for a spinal tap at the end of the week and ordered yet more blood work. He also ordered an MRI but the date was not arranged. I left happy that we were getting somewhere. When I got home and looked up CIDP I was less happy but encouraged by the 80% recovery rate. I figured that being young and otherwise healthy, I would easily fall into that 80%. I also figured that once treatment started, it would be up, up, up.
The spinal tap was an experience that I do not care to repeat. It hurt. A lot. And then I had to lie down for two days to avoid a nasty headache. However, the test showed the raised proteins he was expecting to find and confirmed his diagnosis. He ordered me to start IVIG treatments as soon as possible.
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