I am new to this with little experience with symptoms (feeling very lucky that for now they are 100% invisible). So asking the more experienced members of this community:
Can you tell when a flare-up is coming?
Does ms give you a heads-up when things are getting worse?
Thank you!
Hi anaishunter ... I realize you are trying to make sense of your new normal but, and you will hear this over and over, each one of us experiences MS differently.
I was diagnosed in 1999 and have had only one major flare-up...knock on wood. If I’ve had other flare-ups they weren’t significant enough to catch my attention. I’m very stoic so it could be that I ignored symptoms of a mild flare up and any clues that might have preceded them. I have no way of knowing that now. My symptoms are mostly invisible unless you know what to look for and then you might notice one or two.
Most people don't know when a flair up is coming. I guess if you journal every day you might see a common thread. I do usually know when I am about to have flair up. I can feel the pain in my brain when a lesion is active. I can usually count on something happening in the next day or two. I'm even able to tell about which part of my body its going to be affected depending where the pain is. I was diagnosed 13 years ago so I have had a little practice. Usually heat and cold weather can set off a flair up if you are sensitive to it. I am extremely sensitive to heat. I cannot go out in the heat of summer ( I live in AR) as I get overheated easily and for sure will set off a flair. Last summer I ended up have to make 3 visits to the hospital for Solumedrol IV drip for 3 hrs. at a time. So just pay attention to your body, you will learn what you can and can't do to keep from having flair ups.
Sometimes, but it doesn’t matter to me either way because the hoops have to be jumped through and then the usual treatment and tests. 🤷♀️ My last relapse gave me signs, got better so it got ignored, then it came back, so then on to hoops and such.
By getting worse, I assumed you were talking new lesions and not referring to secondary progressive.
I wish we could get some advance notice, so we could prepare. I can get a little confused about being at the beginning of an exacerbation because I may have a new or worsening symptom that lasts more than 24 hours and is unrelated to stress, heat, illness, etc. I hesitate to call every time I think there may be something going on, and usually those symptoms go away fairly quickly. I am having an MRI this month to see if any of what I've experienced has been disease activity.
Keeping a running journal of your symptoms can help you sort things out better. I tend to forget what symptom I've had and when, so having it written down is helpful to both my doctor and me.
Let us know if you discover any method of making sense of this mystery!
I have no clue. MS is very sneaky and insidious for me. My symptoms wax and wane hour to hour, day to day. Lately, my "MS " days are more frequent 🙁
Coming up on my birthday
tell people everyday you care
When people tell me \"you can't do it anymore, remember you have MS!\"
