How often do your symptoms change?

[Echo2099]

Hello Everyone!

Wondering how often during the day your symptoms change?

The reason I ask is I can wake up with my left leg barely able to move, and two hours later I can walk all over the place with no problem.

Or...

Wake up and be good to go and in 5, 10, 15 or 180 minutes or whatever, be barely able to walk.

This 'cycle' repeats off and throughout the whole day. What makes it come and go, I have no idea. I don't have spasticity that I am aware of and the pain level stays the same throughout.

It doesn't seem to matter what I am doing during the day, exercising not exercising, resting, not resting. It's not at the same time each day, so I don't think it is tied to meds or nutrition.

Just seems to 'cycle' off and on. Like flipping a switch.

Anyone else notice this?

[Thinkimjob]

Yes, I do understand.

it's heat or exertion or luck. Those mornings where I'm surprised to wake up feeling relatively sprightly - it usually ends by midday.
Probably because feeling chipper I try to do too much.

Livin' a dream.

Or wake up feel terrible, and it improves, mainly due to my Joan of Arc grim determination.

[seal]

My symptoms change by the minute. You just never know what's going to present when.

[justacowgirl]

I would just say it is the symptom; whatever you want to call it. It sounds like what I call spasticity and I try to control it "coming and going" with Baclofen so I am stable throughout my busy day.

[Morning Glory]

Definitely!

I was trying to explain this to someone recently. I told her the symptoms don't just change from day to day, but from hour to hour, minute to minute. Every single day is different, and every hour is completely different.

[misslux]

Same here. Things can change minute by minute. It's like a surprise all the time, but the kind of surprise you don't want!

[gazdajl]

Right, all!...it is difficult to document, and it also makes it tough to organize and report to the Neuro doc...and to try and determine when it has become a 'flare'...pretty confusing! Love and Light, all! Jan.

[Mermaid52490]

What a relief to read this!

This is exactly how I feel... I think I am losing my mind, because I can't find any pattern to my symptoms. They come and go, at their own will. I've worn myself out in a futile attempt to control something - After reading this I understand: sometimes I'll have a migraine headache, sometimes I won't. Sometimes I'll have blurry vision, sometimes I won't. Sometimes I can stay awake past 8 pm, and sometimes I can't. That's just the way it is.
Each day I don't curl up in a ball of despair, I am drawing on strength that is not my own, but yours, collectively.

[mjan]

I am just wondering if it may be the HEAT generated from comforters, blankets, mattresses or sleep ware that hold IN the heat?

Jan

[22cyclist]

I think Jan is right, symptoms that come and go so quickly are most likely due to change in temperature whether hot or cold. Although MSers can have more than one place affected in the CNS when having an exacerbation, 3 and 4 are less likely. Especially if they don't happen at the same time. You might be having pseudo-exacerbations which will do no harm to you in the long run, cause no new lesions. It doesn't feel good though.

On average I have about 1 symptom a day, spasticity. It gets worse in the cold, or when I have been lying down for a while. Occasionally I will have some random numbness here or there, but not daily. I have SPMS, but was just dx with that this year, so even all of the years I had RRMS, this still held true. I only got clusters of symptoms if I was having an exacerbation and they lasted then. If I get too warm or too cold I will get a pseudo-exacerbation.

Good luck to everyone here!
Check with your doctors about your individual symptoms to be sure what is going on with you.

Lisa

[pennstater]

I tend to have same constant symptoms. But as Jan said, if I am overheated, get more "phantom" symptoms that come and go. I think J read once that as little as .5° change is enough for those of us with heat sensitivity. I also experience these random symptoms when more fatigued.

As far as tracking, I do jot them down along with note as to whether hot, overly tired, stressed, worked more hours, did physical activity outside of norm, have cold, or ate more junk food than normal. I try not to put too much into it and summarize each month for neuro. I don't call the neuro unless the symptoms are staying around and are more bothersome and affecting daily life, which for me is usually sign of flare.

It is important that your neuro understands all you experience and how it is impacting your work, relationships, and daily living. This will be important if you ever need to file for disability.

[Echo2099]

Thanks everyone for your responses! It gives me more to think about.

I'm not sure why the 'flip of the switch' happens so often during the day. I'm not one that is usually affected by heat. I've always been cold. Always, even before the Dx of MS.

This time of year in Ohio is pretty hard on me. It's just too cold, and trying to walk in ice and snow is really difficult. So I am already looking forward to spring and warmer weather.

I see my Neuro next month and I will ask him about all of this. Thanks everyone for your input!

[gbash]

yes, it's a real bother...

For me, I never quite know how I'll feel the next time I get up from sitting. I may be fine, or I may find myself limping for the remainder of the day. Some days, I wake up in the morning with a weak leg, which could be fine at any point later that day. Or it could last for days upon days.

It makes it hard to plan activities.

[Echo2099]

Gbash...

I know exactly how you feel!

"The best laid plans of mice and men often go astray.." and throw MS into the mix, and it's hard to plan the day or even the hour for that matter!

"A bother" aren't the only words I would use to describe it!

[Ri88]

I never thought how I feel depends on the weather but here I am It's sunny today in Portland so I feel okay but once the rainy days come back the MS symptoms I hate will return