The post about Erythromelalgia that was bumped to the top of the forum yesterday caught my eye. After reading it and doing some googling, the symptoms sound very familiar.
On November 15th (yes, I remember the day LOL) of last year I had a busy day of errands and doctors appointments. That evening, my feet were burning and stinging. It was like my feet had gotten very cold/ frozen and then the burning pain you feel when they start to warm up again. This started suddenly, and was so bad that I was staying off my feet as much as possible for an entire week.
After that week the pain lessened, but I have had it continuously since. The only time it went away was with my last round of steroids, it faded away for about 5 days and then came right back. When it is a low-grade burning feeling, my foot looks normal. When it is a more painful burning (which happens if I'm on my feet a lot) then my feet look puffy, not exactly swollen but puffy, and the bottom of my feet will be a bit red. Not too bad but more red than normal.
I also tend to get red flushed cheeks, which feel warm, for no reason.
I'm not sure the best way to bring this up to my doctor. Would it be ok to just print out a page from maybe webmd and give it to him? Should I wait till I get a definite diagnosis of MS to even address this possibility? I don't want this to distract from my other symptoms. The first neuro I saw dismissed all my other symptoms since the burning/stinging in both feet were not "classic MS". I've lived with the pain for this long, I'm ok with waiting to address it. I'm more worried about MS than I am about Erythromelalgia right now.
I'd steer clear of putting a name to the problem, i.e., printing out your research.
Just do your best to describe what you are experiencing.
Some of the burning you describe does sound like what I get when I'm on my feet, or if my feet are hanging, or if I sit too long and it's not related to my MS. It happens exactly like you say - when you are on them too long, etc. I know mine is just fluid. When it's really bad, they will still hurt in the a.m. This may be something best to talk over with your regular MD.
See how the discussion goes, I hope the Dr. asks all the right questions and that you have a pleasant visit where you feel at ease describing problems and history.
Hi Jess, I agree with Shell. Don't offer your symptom a name. If you want to mention it, I would describe it to the doctor in words that you had prior to seeing the thread. I would let him/her put a name on it.
I would also only mention it in a non-chalant way if the discussion leads to something like that. Since the burning feet were "not classic of MS" I would be hesitant to bring it up at all. I have found if you bring something up that if new it sort of throws them off----I have no idea why.
Doctors can such incredibly confusing people. I don't know why.
I brought it up to both my regular doctor, when I went to see him at the end of 2009 about the possibility of MS, and with my first appointment with my current neuro. I had so much else to talk about that I did not really give much attention to talking about the foot thing. And, I've had it for so long that I kind of started assuming it was just normal. I never brought it up after that first time.
I'm going to just let it go for now.
Shell, I'm pretty sure mine is not fluid. It is a constant pain, in almost 10 months it has only gone away for those 5 days with the steroids. I see my neuro again next wednesday to find out the results of my LP, and to try to get him to help me understand why he is reluctant to start me on DMD. That conversation will be hard enough for me without bringing up new issues LOL
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