Weather and symptoms/Meds

Everyday living
1

Hi

Not sure it’s just me I was diagnosed in March/April so this is my first winter. Is anyone else noticing that the damp weather sometimes make you walk a little slower or not so confident?

I have just had my fourth scan this year this one was to see if any new lesions since starting Avonex 4 months ago and I get the results next week. Both my specialists and Neurologist have said if new ones since started treatment they advise I change meds. Has anyone else been in the same situation, I am expecing a change as easier to think that way but I don’t know how to feel about it all and very scared about it all. I don’t want to tell family and friends as not fair on them to burden them with how I am feeling about it. Normally I am very upbeat and my approach to all of this has been to joke and see the positive’s in it all.

Im just worried that things will progress quickly and I wont be able to do the things I would have liked to have done in the future.

Tracey

2

Hi Tracey,

I don’t think orthodox/Western medicine recognises “damp” as an aggravating factor, but you’ll nevertheless read many accounts from MSers (I’m one of them) who swear they feel worse in this kind of weather!

And my acupuncturist told me traditional Chinese medicine doesn’t recognise MS at all (because it was not yet discovered and named when traditional medicine first developed). So in his alternative interpretation, according to Chinese medicine, ALL my symptoms were due to “damp”. (Don’t take this too literally; I’m not a complete crackpot, and I do believe MS exists - my acupuncturist just had a different way of looking at it).

I think the expression “under the weather” didn’t originate for nothing; it does aggravate a lot of things.

I am nearly a year ahead of you, in terms of diagnosis, so have had a little more time to get used to the idea. Like you, I was worried (and still am, to an extent) that my decline would be fast. I can only say that it hasn’t been the case so far, although life certainly isn’t getting any easier, or symptoms any less - but I didn’t expect them to.

I have learnt it’s important - as far as possible - to take things as they come, and try not to keep worrying about how bad things might get, or how soon - because they also might not. If you’re not careful, you can spoil what is good, by obsessing about things that haven’t happened yet, and perhaps never will.

I would strongly suggest you do choose a relative or friend to confide in, even if you don’t open up to all of them, because you’e making it harder on yourself if, in addition to all the problems MS brings, you’ve got the added pressure of trying to appear happy and jokey. What are friends for, if you’ve got to put on an act for them, and not tell them how you’e really feeling?

If you absolutely couldn’t tell a friend, would you consider talking to a counsellor? You don’t owe them anything, because it’s their job, so you haven’t got to put on a happy face for them. At least you would have someone to talk to about how you really feel, and you wouldn’t have to worry about how they’re going to take it.

On the DMD side, can’t advise, as I’m not on any. But fingers crossed the scan will show the Avonex is working well for you. I think it’s normal they would want to check, and also normal that they’d suggest a change, IF it hasn’t been working.

Oh, one more thing - disability is NOT closely associated with the number of lesions, so even if your scan does find some new ones, it’s not an accurate predictor of how disabled you’re going to be, or how quickly. The brain is remarkably good at rerouting, to minimise the effects of damage, so it’s possible to have loads of lesions, but still be functioning pretty well.

Tina

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3

Thank you so much for your reply Tina.

My friends, family and colleagues know which I decided was the right thing for me as the amount of appointments I have had since this all started in March would have been very difficult to hide.

I think Im just having one of those days were you are worrying about things you can’t control.

Thank you for all your suggestions and advice

xx

4

Hi Tracey,

This cold weather really affects me I do good in the warm weather (In fact the warmer the better for me) when I go on holiday to Turkey every year when its really warm and sunny I can feel almost normal for a week or 2 :slight_smile: but In this weather I really notice a difference It got me down a bit the first year it happened I thought my MS was getting worse. But it was the cold weather I’m just so stiff and of balance I just feel my legs and everything are made of lead even my speech and memory and thinking aren’t as good :frowning: but when the weather gets milder I get better again.

I was diagnosed in October 2006 I was on Avonex from March 2007 to June 2008 but it didn’t work for me (It works well for others) I was relapsing every 4 or 5 weeks and my MS was getting worse and my MRI scans showed how bad it was getting everytime they showed more lesions I was told then I had aggressive relapse remitten MS and got to start Tysabri in August 2008 thankfully that work for me I haven’t relapse since and my MS just keeps getting better the MRI’s I have every year has showed my MS is stable and I even have less lesions now.

Mark x

5

Hi Tracey

I notice I feel worse when it’s very damp. I think it’s to do with the humidity - I’m the same in summer and can’t stand it when it’s really muggy.

Dan

6

Hi Tracey

Weather conditions - just like other factors - can make a difference to how we feel. I love the summer but humidity just wipes me out, my fatigue is so much worse and it feels like I’m walking through concrete. The winter has similar effects on me but doesn’t appear to be quite as bad - generally speaking.

I was on betaferon for just over a year but all it did was make me feel even worse so my neuro decided to give me a four month break before I started on copaxone which I’ve been on for about 6 or 7 weeks now. It doesn’t necessarily follow that every drug or medication is the right one for us as individuals so sometimes a change may be necessary.

Confiding in people about your ms is, in my opinion, a personal choice. I chose to tell those closest to me - including my colleagues and bosses - and on the whole everyone’s been great, they’ve been very supportive. It’s helped me - a lot. If you can’t talk to your nearest and dearest then how about a counsellor instead? It’s a good idea to talk to someone, we can’t always deal with stuff on our own. Like you I try to joke about things too, laugh off some of the stuff that my body does now - but however hard we try we can’t always do that, we don’t always feel like doing that either. It’s normally when I feel this way that I start to worry about the future and what it holds for me. But realistically none of us know what the future holds and even if we did we couldn’t control it anyway - so although it’s difficult not to fret about it, it is a waste of time…well that’s my theory and I’m sticking with it…

If I were you then I’d look at confiding in a friend first…at least think about it.

Good luck, pm me if you feel the urge to offload

Debbie xx

7

Thank you all so much for your posts. Feel so much better today about everything.

If I don’t post again before Christmas I hope you all have a fantastic Christmas and New Year.

Tracey

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