Hi every one, I have a question that has been puzzling me for some time. I have asked my Doctor and the Neurologists and they have not really seen any study or information to clarify my question, so I will put it to the people who know.
Firstly I am PPMS and have had symptoms for about 10 years.
My question is; when you have a new symptom or an exacerbation of your symptoms does it happen over night or during the day?
I have often noticed the change during my day but have always thought that the change happened when I was sleeping and noticed the change during the day. I think that people with RRMS can answer this more accurately and I think it is part of the puzzle to MS that hasn't been answered, yet to me I believe it is an important link. When a person has a major sudden onset of symptoms and they have an MRI there are sometimes many lesions seen, yet the symptoms happened 'overnight'. How can so many lesions be there and yet the symptoms onset happen so rapidly? If you have any insights please can you add them below.
Thanks for your help and input.
Take care, Nigel
I do not feel I can accurately answer your question as I would not know whan a new sx. The drugs knock me out an night so I would not notice if anything new had happened then....but I would notice any new sx in the day. Also sometimes if sx come and go it takes me while to decide when they have occurred and I wonder if they were in my imagination ..until the next time I feel them.
For me this whole thing is a huge learning curve and I feel I am just getting to understand th MonSter in my body.
I don't know the answer to your question nor feel qualified to surmise, but I wanted to comment that just recently I have started wondering about this exact same question!
It first occurred to me when I heard David Osmond speak at the MS Centre Without Walls symposium in L.A. back in May. He talked about how he just woke up one day and was paralyzed from the chest down. This was his first MS attack and led to his dx. After that, I too started thinking about the whole "One day I woke up and....." then some odd symptom appears seemingly out of nowhere, overnight and without warning. Like, how can you walk normally one day and then the very next day be paralyzed, and continue to be paralyzed for months on end? It's so baffling, disconcerting and scary, the unpredictability of this disease.
Case in point: one day in Sept 2007 I woke up and the very tip of my pinky finger on my right hand was numb and tingling. DIdn't notice it when I went to bed the night before. The next morning I woke up and that whole hand was numb. The next morning, my left cheek, ear and neck were numb. The next day, my left hand. About two weeks into this, I woke up to double vision. For many months, the first thing I would think when I woke up was, what else is wrong with me today? I would lay still a few minutes to mentally inventory my body parts and figure out whether anything felt wrong. It took a while for things to settle down, and only after a course of Solumedrol, for that question not to be the first thing to be in my head upon awakening, which was a relief, because that kind of persistent worry is exhausting in and of itself.
There was the precursor I experienced the previous year with Lhermitte's, but I dismissed my GPs concern re: MS when the first MRIs were clean and I wasn't suffering, feeling sick or othewise like something serious was wrong. Fast forward to Sept 2007 and the very moment I awoke and realized the numbness in my pinky finger, I immediately thought to myself, D*mn it, it IS MS, he was right all along! And he was.
What an interesting question. I have nothing really to add because I have to ponder this for a while. I think for most of us the symptoms are cumulative and lead to a gradual progression and not the dramatic examples that have been given. But like everyhthing else MS, this isn't 100% and you do have people who suddenly can't walk, or can't see or any of those other devastating problems. How about that - using lots of words to say nothing.
I think the reason why we perceive it as happening 'overnight' is because it's eight hours, during which we aren't seeing a change in symptoms. We aren't walking or talking or looking at stuff, because we're asleep.
For me, I see my symptoms getting worse over a period of days. I'll start sleeping more and more, and I fall asleep earlier and earlier every night.
I'm thinking the same as Jen, I seem to accumilate the issues over a few days, eg increased tremor begets increase in fatigue begets mobility issues begets increase in cognitive dysfunction begets etc until everything has gone to hell in a basket.
Its not like i suddenly wake up and bam, its game on, though after being in a state of slumber it sure can feel that way. I think i'm too busy just trying to ignore the most of it and get through it, until its so in your face i have to take a time out, eventually the time outs take over and i'm almost sleeping around the clock.
I've wondered if the body has rested during the night and when your asking it to function, even those basics are more than its able. The stark contrast of the two where the first (sleep/rest) has very limited expectations on body function and the second (fluid movement/ gravity/ coordination etc) which is needed but lacking, just makes it stand out more. The brake down of the neuro's is happening over time and even when your asleep but the functions after a sleep/rest is when the damage is more evident, maybe?
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