In early January after a month or so of feeling quite good, I started to have an increase in my symptoms. My hip pain came back with a vengence and the burning pain at night was going from the heel of my left foot all the way up. I was taking a much higher dose of gabapentin then normal just to be able to sleep and the pain was unrelenting.
At the same time, I noticed that I felt stiff during the day and started having trouble walking again. My leg was heavy and I felt like it was vibrating (for lack of a better way to put it). The muscles started cramping again at night and my fatigue during the day began again in earnest and I would “crash” around 3 – 4pm.
I thought maybe I had developed a UTI as I also noticed increased frequency, but I went to my gynecologist and the culture came back negative. I didn’t feel like I was getting sick and I had been checking my temperature daily, but was not running a fever.
After a week or so of this, I finally called one of the MS nurses to ask for advice. She called me back and asked me to come for an appointment. My husband and I discussed it with the MS specialist in detail and she felt that what I was experiencing was most likely due to the prior spinal cord damage. She suggested an MRI was the only way to know for sure, although she wasn’t expecting to find anything. I agreed to go as I hoped it would put my mind at ease.
To my surprise, I received a call early the morning after the MRI from one of the MS nurses telling me that there was a new lesion on the MRI report, but that the MS Specialist was only able to see it on one sequence (I took this to mean it was small), but that my other lesions had improved. They offered me steroids, but said they didn’t think it was 100% necessary. I declined as they made me feel so awful last time and I figured we were so many weeks into this that I should be able to make it through. I have not yet seen the MS Specialist to discuss the MRI although I am supposed to get an appointment in March (I’m waiting for a call with the date).
I’m unsure if my most recent experience was a relapse, but it stirred up a whole mess of questions and emotions that I had thought were somewhat settled in my mind. I’ve spent a lot of time since worrying and crying. I don’t know if it is normal to have a new lesion (even a small one) this soon after treatment. I don’t know if this speaks to future disease progression. Or maybe it means nothing? I find the whole experience has left me feeling remarkably disturbed and seems to have set me back significantly in the acceptance process.