Flare vs. Exacerbation vs. Relapse?
Hey fam. Im very confused at the moment and trying to understand what's going on with my body. Ive been having some recent trouble with symptoms that are unusual. A few months after my initial diagnosis in 2018 I had a "relapse" and at that point I lost pretty much all function in my left arm and leg. Fast forward to now and I am pretty much in "remission". I have full function of my left side again with some slight issues from inflammation here and there. Sometimes my balance is bad but for the most part no problems. I had my most recent Ocrevus infusion about 10ish days ago (probably worth mentioning that it was about 3 months late). The past few days I have had a recent onset of symptoms that are not necessarily new, but are not normal of my day-to-day function. I have had heaviness in my left leg and arm and numbness in a few of my fingers on my left hand. A lot of brain fog, which seems to be better now, and some clumsiness (dropping things/forgetting what I was doing or saying). I have also been having a lot more fatigue than normal. I sent these symptoms to my doctor on Monday. Yesterday morning (Tuesday) the office called me and said that my neurologist thought I was having an "exacerbation". The last time I heard that word was when I woke up and couldn't walk. Cue anxiety. They sent me to get a UA and an MRI of my brain. UA came back negative and my scans showed no new or active lesions. I started steroid infusions today and I'm supposed to continue them for the next 2 days if I don't feel any better tomorrow. I guess all of this to say/ask, if I have no infection and no new lesions or active lesions, is this truly an exacerbation? Is it a flare? Are those the same thing? So many questions and I just want to understand what the heck is going on with my body and why it doesn't do what I want it to do. Not to mention it looks weird to my boss and my co-workers when I look like a normal human being and you can't see that something is physically wrong. Any clarity, advice, or even just good questions to be able to ask my neurologist would be helpful. Thanks y'all.
Hi.... I can so sympathise with people (at work) not understanding the situation - you really do feel judged because you look 'normal' but are feeling far from it when going through an exacerbation/flare up/relapse. I have no medical 'training' but I 'understand' it like this - a flare up is a symptom that you have had (in the past which has been in remission) which flares up for a short period of time (1 day or so) - an exacerbation is the worsening of a symptom which you have had in the past, also for a short period of time (basically the same as a flare up) - A relapse is when you get symptoms which are not going away and 'worsening' daily (my neuro usually says you should give it at least 48 hrs if not severe). If I start showing signs of optic neuritis I do not waste time and get in contact with my neuro immediately. But, if I start showing other symptoms (I also battle with my left arm being unusable) I give it a few days to see if it is actually a relapse which needs steriod treatment. It really is a waiting game! I would advise you to not skip or be late with meds (if possible) - I have had a relapse in the past due to medical aid authorisation issues and meds being a week late. Had an MRI at that stage, and there were no new lesions or anything like that - no real reason for the relapse at all - so it is possible to have a relapse/flare/exacerbation with no new lesions. Good luck with the steriod treatment - I know for me it first gets way worse before it gets better while on steroids. But hang in there! It does get better!
Thanks for the reply! That info is super helpful. Yes the gap between treatments was definitely not intended. I dropped the ball on getting bloodwork and scans done in a timely manner. Sometimes life just happens but I need to work on making that stuff a priority! Any tips for the ratchet taste the steroids leave in your mouth haha its been a bit since I have had to get it done but I was reminded really quickly of that part lol