Does the severity of your leukodystro... - Leukodystrophy Ca...

Leukodystrophy Carriers

Does the severity of your leukodystrophy symptoms differ according to the time of year?

Suzanne-AlexTLC profile image
Suzanne-AlexTLC

Now that it is Spring, the weather is starting to improve and it's becoming warmer. Has anyone found that their leukodystrophy symptoms are different; becoming better or worse?

We were interested to find out from you, whether your symptoms differ in severity depending on the time of year and weather, if so, then let us know how.

8 Replies

Definitely! Weather has a profound effect on my symptoms. Summers, even Scottish summers, make me feel sapped in energy, especially till around 7pm. I function much better when it's cool and therefore, prefers winters.

That's really interesting that you find that your symptoms are better for you in winter opposed to the summer

I find I walk like a robot and am stiff in the winter if I can't keep warm when I go out. I am ok up to about 75* in the summer but after that, unless there is a wind (or a swimming pool!) I can't cool down and start overheating and feeling very fatigued.

Thanks for your response! Do you think as it's cold and you are unable to go out as much that the lack of movement contributes to your symptoms or just the weather itself?

With not going out much this past winter the lack of movement has contributed, but going out in the cold is a different type of seizing up. It is the same if I get into a swimming pool that isn't warm enough.

I see so although lack of movement has contributed, the cold is a separate factor in itself

Yes

pujitgandhi profile image
pujitgandhi in reply to Cherie

Actually, too much cold is a problem for me as well but it's easy enough to put lots of layers on and keep oneself warm. But similar to your experience, moderate temperatures (above 20°C) coupled with no breeze makes me feel utterly exhausted.