Cold feet part 2

As I am “queen of extremely rare disorders,” it is only fitting that my cold toes would be caused not from cold, but by Raynaud’s Disease, which I was diagnosed with yesterday. Who knew such a thing existed? Apparently it’s not that rare, but that does not make me feel much better about it as it can be an initial symptom of much worse things. I never had his before the gamma knife. he problem is usually on the same side of my body the gamma was done on (ie NOT the side of he body that part of the brain controls.) My neurologist said the two were not connected, but I feel intuitively that they are. his is what happens:

My toes (usually just some of my toes, not all. Could be only 3 on one foot) get REALLY cold, as if I have been walking barefoot in the snow. This happens during warm and cold weather, indoors and out. The toes are so cold they are numb or feel like pins and needles. They will turn white or blue. Later they go back to normal.

Does anyone else have this? I really think it might be related o the gamma. I guess it it aggravated by stress, and treated with blood thinners. So, it’s also ironic.

Hey Marilyn, what do you do when this happens? Is there anyway to warm them up, this must be very painful. I know that Brad stayed cold all the time after he started treatments. He was never like that before.

I have it, I thought it was related to another illness I have, fibromyalgia, since I havent had gamma, I dont think mine has to do with that. But if you have any questions about the illness let me know!

Sometimes I try rubbing or squeezing them, putting on extra socks, etc. But this does not really help. It just lasts until it stops. It is sometimes so bad I can not sleep. A lot of the time, my toes won’t be cold, but my feet will generally feel like pins and needles (but not “asleep”). I never had this before, either. It is supposedly an auto-immune disease, but I tend to think (hope) otherwise.

It’s like whatelse can happen?

My cousin has this. She doesn’t have any other neurological problems, as far as we know (she’s in her late 20s, like me). I don’t think she’s found anything to help the problem, although our grandmother insists on sending her lots of very thick socks.

I am floored that you are sharing this. I was at a horse show recently and one of the horse show moms – they actually stable at the same facility we do-- shared with me that she had this condition. I had occasion to tell her that my hands and feet get cold very easily and then she elaborated on Raynaud’s Disease. Apparently the tips of her fingers turn white. She said there is nothing they can do about it. And she just monitors herself. Mine don’t go to that extreme. You just never know what’s going to pop up next. Keep your chin up. You have been a real stronghold for this group so please edon’t get discouraged. Take care & keep posting updates.

Love, Nora

one word…acupunture…muahahaha. I hav abit of pins and needles on my right leg(avm left side of the brain) somtimess…ohh…just happened. ok alot of times. my right toes still feel slightly numb even tho its like summer here whole year round