Tuesday, March 31, 2009

Burning and Freezing Redux

This time I cannot blame the Copaxone. I guess we're calling it parasthesia but I think torture is simpler and maybe closer to the truth. (Have you noticed my love of vocabulary? Sorry if it's annoying.) My feet have been alternatingly burning and freezing while simultaneously numb and tingly. Is it even possible for Normal People (non-MSers) to have this many differerent sensations happening in a body part at one time? This has been going on for more than a week and I have tried it ALL. I've tried warming up and cooling down. I've tried all the meds at my disposal. It seems to be worst in the morning, late at night, and whenever I'm moving around a lot. And it's spreading; north up to my knees at times.

It started right before I came down with Shiva's cold, and I told the Novartis Chick about it like, three days in. The Novartis Doc blamed it on my cold, ("Maybe you're running a fever," he says 5 minutes after the nurse had determined my temp was normal), but I was pretty sure he was wrong. So I went to my usual neuro. Usually I think of my guy as damn near sainthood, but this time he sorta looked at me in a way that made me feel completely pathetic and said, "You have MS, what the hell did you expect?" I'm euphemising of course, but that was the gist. He did NOT say that I was relapsing -I like to call it "backsliding"; I stole that from the Christians - or even having an exacerbation. He prescribed me Nortriptyline which hasn't made a lick of difference yet. In fact, it's gotten worse and I am standing on the precipice of contemplating amputation. I'm in the burning stage now and have just agreed to putting them in ice water at Shiva's suggestion. Okay, I put one foot in and he made the steam hissing sound effect, and now it just feels numb. Now it's that stupid feeling you get from IcyHot ointment. Alright, fuck this, let's just lop them off.

I called the Novartis Chick again today and she asked if I'd been having any other symptoms, like fatigue. I told her the other day that I have been pretty fatigued, but also having a hard time sleeping at night. She knows how wacked my work schedule is too, but this time I left out all the excuses I tell myself (other than MS) and everyone else for being tired all the damn time, and just admitted that the fatigue right now is baaaaad. She said she'd talk the Novartis Doc and call me back. Must've lost my number.


Bald Ben said...

Wow, that sucks man. Has your MS centered in legs from the beginning? I have a lot of pins and needles in my feet but not that burning freezing thing.
Out of further curiosity, is it hindering your walking? Inquiring minds want to know.
(Sorry one more, I have alot of questions)
Being on the trial medication does it hinder rescue medications like steroids and stuff?

Enough of my inane questioning.

By the way I noticed you updated your current music. Neko Case...Seriously, her new album is killing me. I can’t stop listening to it.

pUNKrOCKfairy said...

BB- Death by Neko Case is really a good way to go; I should be so lucky.

Yes, most of my MS issues have been with my legs although the relapse last year also affected my left arm. And this most recent problem had not been affecting my gait... until today. Today I feel wobbly and weak in the legs in addition to the burning/freezing. No, I don't think being on the trial drug will change whether or not I can use IVSoly or whatever. I talked to Novartis Chick today about being "reevaluated by the offsite neurologist" and I guess they'll decide what to do with me after that. It'll be a bit late for 'roids by then though.

The questions aren't bothersome by the way. I'd probably be a better writer if I had someone to ask me all the right questions.

Bubbie said...

Sorry Punky, I have never found something to help with the combo burning/tingling/numb but still painful feet. What a trip. No one would believe this if they didn't actually experience it. The jumpy leg muscles and the pain is what keep me up most nights. The good news is that it does seem to pass on its own.The bad news is that it tends to return for no special reason .

The Ardee Man said...

Sorry to hear that, i havnt had much trouble with my legs but my right arm is pretty similar especially my hand. It feels hot and much more stiff and a little cool too, at night its worse. im on copaxone and dont take much else. i try to keep my mind of it although its hard to do, i dont know if there is anything else one can do. MS is a pain in the balls!!

pUNKrOCKfairy said...


"No one would believe this if they didn't actually experience it. The jumpy leg muscles and the pain is what keep me up most nights."

I know, right?! Trying to explain these issues to Normal People, I sound like a lunatic, and I can't express how unnerving it is without sounding like a whiny baby. And as if I wasn't tired enough, I can't sleep with my feet on fire, the rest of my body frozen, and my legs wiggling around like electric eels.

Ballocks, all of it.