Hello. Some of you know me, many more of you don’t. Generally my posts tend to be long, but I’ll try and make this one short.
I had an MRI done recently as I have an appointment with my (new) neurologist in just over 6 weeks. I got a call from my MS nurse yesterday and she let me know that it’s good news and the MRI doesn’t show any new lesions. Of course, it is for the neurologist to discuss this with me fully and explain most of what I’m about to ask here, but it’s nice to get community input sometimes.
What confuses me most about being told that my MRI shows no new lesions is that I am getting steadily worse. This isn’t something new, either, as my condition has been stagnant or getting worse for the last 16-18 months (mostly the latter) with absolutely zero periods of remission (ironically I have RRMS). My last (two?) MRI scan(s) have shown the same lack of new lesions.
I asked my MS nurse how it can be possible for my brain not to show any new lesions or any general activity (although I cannot be certain of what she said about my old lesion, as I can’t remember) yet my symptoms be such that I can’t walk, talk, hear, see etc etc normally. I also asked if it is possible for everything that I’m experiencing to all be down to a single old lesion and if it was all residual symptoms from that. I was told that it could be possible, but they’re not sure.
I mean, having MS is confusing enough, but when your MS can’t even decide if your MS is MS, things start to get annoying. I don’t understand how such an aggressive onslaught of worsening symptoms can happen without new activity in the brain, as I always assumed the two went hand in hand.
If anyone else has had any similar experiences, I’d love to hear them, but perhaps more importantly I’d be curious to know what kind of questions you guys think I should pose to my neurologist. I have a few in mind, for example “what part of my already failing body thought it would be funny to make my symptoms worse and not leave any evidence?” and “what part of my brain was my previous lesion on and what things does/did that affect. Is this still ongoing?”. I’d really appreciate some input as I feel meetings with my old neurologist (lovely lady, but unfortunately she’s left) was a lot of playing “touch my finger, touch your nose” and generally aimless conversation of which I would recall 5% once out of the office.
Also changes in mood. What. The. Hell. One day I’m ready to take on the world and the very next I’d rather be 6 feet under. I’m not suicidal by any means (I would like to stress this), it just feels like sometimes I’d like to take a permanent nap.
Guess I don’t know how to keep things short, after all. Ha!
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