My MS story

I guess I will start at the beginning, it is a good place to start afterall.
Technically my first symptom of MS was Lhermitte’s sign, but I didn’t know what that was at the time. I actually thought it was related to back surgery I had the year before, I even made an appointment to see my neurosurgeon who had worked on my back before. But shortly after, I began having blurry vision, optic neuritis. Per usual, I waited several weeks before going to the eye dr. He saw nothing in the exam, but I am guessing based on my description of the problem he sent me for an MRI. When the results came back, he reassuringly stated I did not have a brain tumor, but needed to see a neurologist immediately. Lovely. Off I went to a neurologist, who ordered more MRI’s. I am a bit fuzzy on the order of learning results, (oh how my memory is cooperating with me now) but I would eventually learn I had lesions in my brain and on my spinal cord. The neurologist wanted to do a lumbar puncture as well. Remember the back surgery I mentioned? That made the lumbar puncture tricky. It took 45 minutes, of inserting and re-inserting the needle because the scar tissue kept redirecting the needle once inside my back. Yeah, that hurt. Oh, and that headache you can get? Because the site doesn’t clot right? Got it. I had to go back to the hospital days later because I was leaking spinal fluid. It was miserable, to say the least. So all in all, MS was the eventual diagnosis.

Along the way I have had yearly MRI’s, some good, some not so good (lesions in the thalamus, pons and spinal cord) and three relapses. I have experienced mostly sensory symptoms during the relapses, numbness, tingling, burning etc. During the first relapse, I couldn’t feel my entire right side. Yeah that was fun. I currently have most of the feeling back, but it comes and goes. There are times I struggle with ongoing numbness and tingling in my legs as well. The other major symptoms I deal with are cognitive symptoms. These seem to cause the most trouble in my day to day life. I struggle with ‘Cog Fog’ (love this term, probably because it rhymes), memory issues and tongue tied-ness. These all seem to crop up at the worst times (think super important meetings where my mind goes blank, not helpful!) but I’ve learned to just roll with it (still a work in progress sometimes). The more anxious I get about what I sound like or what people may be thinking about me, the worse the symptoms get. The best thing I’ve learned so far is to take it one day at a time.