This Is MS Multiple Sclerosis Community: Knowledge & Support

[New person here, for those who didn't see my intro, I'm Jennifer, no MS diagnosis, have some mild neurological symptoms of undetermined origin.]

My question for today is: Talk to me about how activity level and types of activities affect your symptoms? I've seen mention of this in some other threads; it hasn't shown up much in my 'general MS' reading I've done elsewhere except as a vague "rest is helpful" kind of thing.

What has been your experience? Do you have symptoms that seem to increase or decrease from day-to-day (or more quickly) based on what you do? What specifically? (types of symptoms, types of related activities, if any)

My neuro (speaking out of his depth, he admitted, nice guy) said he thought MS symptoms tend to come and go over a course of days, weeks or months, not on a shorter timeframe. Reading here I'm pretty sure I saw several mentions of symptoms getting better or worse, or appearing and fading, on a much faster scale.

Talk to me.

thanks,

Jen.


[BTW, I'm uncertain how quickly this forum moves, but in any case, this is a thread I am happy for folks to re-open (on-topic) even after it is old. When the time comes.]

Hi JenniferF, and welcome on board.

I have a type of ms which is very stress-sensitive, and it usually starts with optic neuritis followed by heavier physical symptoms if the stress is prolonged and/or intense. When I notice my eyesight starts getting worse I try to stop what I'm doing and get some rest and/or a good nights sleep. It usually works and I'm back to normal the next day.

I must disagree with your neuro based on my experience. My symptoms can come and go within a very short time, often a few hours.

All the best,
Thomas

Jennifer,
I have had "numbish" toes since 2006.
Some symptoms can come and stay for a month or two.
Some can stay for a few days.
Some for hours.
Some minutes.
Even seconds.

The daily ones I pay the most attention to are the new ones. The old ones visit me whenever they want. The new ones grab my attention, then fall into the "old" category pretty quickly.

The ones that scare me so far are intense numbness and double vision. I do not have either of these as "regular" visitors. When I get these, it's a big deal.

For the big relapses, I could not tell you what causes them.

For the day to day stuff, I'm sure over-exerting makes a difference.
Heat, in itself, for me does not seem to matter, though it does for others.
Smoking made my double vision worse.
My assistant at work tells me I stumble more when we've had a stressful day. (her observation- I'm not sure)

Can't think of anything else at the moment.
Terry

for some of us, our MS is all about effort exerted. When I'm sitting (as long as I've got a fairly empty bladder) I'm really not too bad. After 200 ft. of walking or so, I can fell every hair on my legs and they are just tingling like a 20V shock or something. By about 500 I look completely inebriated and need to use my cane. If all I'm doing is walking around the house and getting things and just 'hanging out', I do OK. It all goes downhill for me with effort; every day. Terry has it right, a relapse is new symptoms, but for me anyway, I have ability impairing flare ups every single day. Some days are better than others and I can do more on those days. Some days absolutely suck and I feel useless. You really learn how to conserve your energy. I used to be a fart in a windstorm going up and down the stairs probably 100 times a day. I now have a big old beach bag type of thing that I accumulate stuff in to consolidate trips up and down the stairs at home. It's my existence now. I will exercise myself into a state of complete lack of self control, but as far as life goes, I now try to keep my activity down to a dull roar since I will get weak legs, worsening of my vertigo, bad eyesight and tingling and numbness in feet and legs. I think maybe me and Thomas are related! His sounds alot like mine. I hope this helps. For me it's a pretty simple equation. Effort = worsening of symptoms and the corellary is direct; more effort, more worsening, less effort, less worsening.

_________________
http://myhopefuljourneyintoactualmsreco ... ogspot.com

We can't give any generic answers because everyone's MS is different. A relapse for me is 3 days as a rule, but I think Cop is helping, it used to be 2 weeks.

But for me, hard physical work can do it. If I dig the garden for a whole day I have to spend the next day in bed, every time. So I have learned to do things like that in 2-hour slices. This is the hardest thing for me. I used to be the soul of every fund raising event, dawn till dusk, and now I just do one shift then lie down. I have learned to delegate, if there is a lot to carry I commandeer helpers. If I buy heavy stuff I have it carried to the car. If heavy stuff gets delivered I have the driver carry it up the steps.

I can also get a relapse by getting very hot, for example after a sauna I will sleep all day. So I gave up going, shame.

Stress is a big problem too, at work I just refuse to do the high stress jobs. I say, sorry, my health won't allow it. That's OK, the younger ones are pleased to have the chance. And if I have to do a high-level presentation, for example, I stay really cool. So what if the projector breaks? I can talk out loud, I know my stuff. I avoid stress situations at all costs, I try not to get into arguments, I say, your statement does not agree with the facts.

Most people don't know I have MS. I just say I have a nerve problem that makes me numb on my left side.

_________________
Bibo ergo sum

As for me...

Presently in physical theraphy. Somedays after PT I get home and am wipped out and spend the next day in bed or on the recliner. Other days I'm feeling pretty good.

I had what you'd probably consider two incidents. One was optical neuritis with lesions on the brain and the other was new lesions on the brain. Your MS sounds very mild(fingers crossed) like mine(other hand's fingers crossed(wait how am I typing lol)). Personally I was not sure what was going on with me for quite a while and I continued my regular activities. A year later I've noticed that it is a bit harder to maintain my fitness(I am still able to run though) and I've been forced to cut back the intensity of my runs because I get quite fatigued and a little woozy. As soon as the runs are over and I start to cool down I feel a lot better. I wasn't able to do much but swim this summer because the heat has started to get to me. I'm able to operate normally but it drags down my energy and motivation and makes me feel groggy.

To answer your question from my experience, which as someone else mentioned is unique and could have no bearing on yours, the worsening of symptoms caused by heat and exertion is only temporary and leaves no residual effects. It may leave lasting damage if you really push it, for example trying to run a marathon in 90 degree weather or something.

All in all I'd actually push for further research into the cause of your problems because the sooner you get a diagnosis the sooner you can start some type of treatment if needed. Some will argue that the "preventative measures" like Copaxone, Avonex, Beta seron, etc. don't help but I really feel like mine has kept me almost entirely symptom free for a year even if it's just in my head(optimism is key!). In the mean time take special care of your diet. Don't do anything extreme but try hard to stay away from processed foods, hydrogenated oils, MSG, fried foods, and other unhealthy things. Take a multi-vitamin or figure out which supplements would be best for you(Jimmylegs is the expert). A big thing for me, as I mentioned, is keeping active. If you can manage it exercise when you can, you don't need anything intense but staying active really keeps your body functioning right and will definitely help your body maintain itself. These are things everyone should do but when something like MS is thrown at you, or even a scare, you realize that you have to take special care of your body.

Sorry for the sermon. Good luck with your continuing medical search. [/i]

Everybody, thank you! That is very helpful in getting my mind around the variety of possibilities. I haven't any idea what I do or don't have, but it is nice to hear I'm not a crazy person. (Honestly, a reason I put pursuing a diagnosis on the back burner is that I'm tired of being treated like I have hysteria.)

I'm trying to do the stay healthy thing, and that in itself is giving me a better understanding of what I'm experiencing and what makes symptoms better or worse.

Jen.

BTW, my apologies for not reading replies sooner -- I'd thought I'd checked the 'notify me' box, but I hadn't -- so I thought everyone was on vacation or whatever ; - ).