CCSVI, warm & cold weather

[homefront]

My wife, who was diagnosed ppms in 2007 gets worsening symptoms when the weather turns cold. We know though that a lot of pwms get worse when the weather is warm.

Apologies if this has been asked before but has any explanation been put forward regarding CCSVI and the effects of cold or warm weather on ms symptoms?

Also, does anybody else feel worse when it is cold and have you found any ways to reduce this?

Many Thanks

[BELOU]

I have RRMS since 2004 (EDSS:0) and cold weather affects me. Difficulties speaking, even if my wife always tell me that I can't stop talking

[Mathd]

I've been diagnosed with ppms and I cant stand outside under the sun for more than 15min, after that i'm down for an hour to cool down, or I need a cold shower...

I'm still in better shape when it's cold than when it's hot... in fact Im cold resistant:
I never add insulation under my hardshell, even if it's -20...
I'm driving with windows open until it's -10... (unless if my girlfriend is in the car)
and I have my mind clearer when I'm breathing cold air...

and when it's warm, I'm having headaches

[Bobbi]

You're not alone ... heat or humidity affects me terribly. I need fresh air, air conditioner on, a hand fan travels with me, blow dry my hair on cold...
I lose my mobility, my cognative, my bladder etc. Cold showers and constant air.
Cold gives me cramps in my legs, feet and hands. Doctor says it is arthritis ... but I think it is MS.
Hang in there ... the procedure will be here sooner than you think.

[Rokkit]

I'm undiagnosed, but probably PPMS. Cold affects me much more than heat. This hasn't improved since my "liberation." I haven't found anything that helps other than to get warm.

[zen2010]

I have ppms since Sep2009. Cold is clearly my “enemy” regarding ms symptoms. When I feel cold optic neuritis occurs and my ability to move gets worse.

So far, I found only one way to stop the headaches: HEAT
I put my head under hot water and the optic neuritis just vanishes

[homefront]

Thanks for the responses all.
My wife only feels better when the weather gets warmer.
Would love to know why it is cold for some people and warm for others though. Maybe it is to do with parts of the nervous system that have been damaged. We will keep looking.

[Mathd]

2.5 millions of pwMS in the world
2.5 millions kind of MS...

damn, and they're trying to create drugs to stop that?
no wonder it's still not working at all

[SaintLouis]

I always get bad headaches when the weather goes from hot to cold. I attribute it to the fact that blood vessels constrict in cooler weather and blood thickens as well. A double whammy.

[homefront]

Thanks SaintLouis
that seems to make sense for you and my wife who get worse in the cold but doesn't seem to explain it for the people who are worse in the warmer weather.
If only all the jigsaw pieces were in the same box!

[kc]

Homefront,

I am the same as your wife. When I am too cold, the pain starts and I turn purple. When it is too hot and humid, I crumble like a wilted flower. And I always have to drink water constantly, I think this is due to my blood volume.

Weather is the key to how I am doing that day. It does make sense as the veins either dilate or constrict according to the weather.

Today I am having a blood draw and that will put me down. Luckily the nurse is coming to my house so I can immediately go lay on my inclined bed afterwards. Since I have been sleeping inclined, I can see my veins better in my hands and arms.

Your wife is not alone.

kc

[bluesky63]

For me, I have a very small comfort box in which I can function. If the temperature (or air pressure?) gets higher or lower than that I have big symptoms. So both heat and cold can be a problem. Heat makes me wilt, cold makes me tight, spastic, and in pain, both make me foggier than ever. But I really love those fleeting weeks in spring and fall when I feel like Goldilocks and the porridge is finally just right.