Another Question as I make lists for the neurologist on Tuesday

General
1

Thank you all for all that you have shared already.

I want to ask the following novice-like question:

In between flares, assuming that you are not in a constant state of flaring, do you have any periods of feeling "normal" in your feet or hands?

For me this is a typical day- remember I was diagnosed by a doc who deals with eating disorders and thus understood that my chronic low sodium might be the culprit and she saw photos of my feet- all the other specialists over the past year have "poo-poo'd" the low sodium because it isn't dramatically low - the sodium and chloride are each like 5 points off the lowest score on the scale but it is chronic so it has had time to do a lot of damage.

Anyway, between the level 10 pain and redness and swelling of my toes and the soles of my feet, I never feel normal. I have constant neurologic activity. I feel pins and needles, popping and like the whole bottom part of my legs from my knees to my toes are attached to my body with wires- like I am a puppet. I never feel like anything in my lower leg region is just the way a normal person feels. and this has been since August 2012 when my toes went numb- before the pain and burning started in July 2013.

Can you please describe your pain or your symptoms between real flares?

Thank you!

Jordy

2

Thank you Tizzy, How long have you had EM?? do you have it in your hands and feet?

3

Hi Jordy.

I rarely feel normal in my hands and feet. Mine are usually burning or freezing . They are almost never what I would describe as normal. I have had bouts of strange sensations but not on a daily basis. One time for about a week it felt as if a section on my foot was constantly being stung by tons of bees. I have had what felt like water droplets on my knees and nose that when they occur last for a few months at a time as well as a crawling sensation in my ears that come and go. On a regular basis however it is generally a temperature problem with my hands and feet. In that rare moment they feel normal it feels so good! I may just get that sensation of normal for a minute or two at a time and only once in a blue moon.

I am sorry to hear your strange sensations are constant. Even when I have a sensation that is not particularly painful it still wears on me. It tries to drive me crazy!

I hope you find some answers and some help.

Take care,

Alina