Kira
10-24-2007, 10:41 PM
I saw my pain doc today and had a couple of major things to deal with.
I've had pretty poor pain control lately and have been maxed out on my breakthrough meds on most days, so I finally let her increase my fentanyl patch dose after four months of saying no. We will see if that helps.
I also told her that I have been really sleepy and foggy and out of it lately, which I think is probably from the mito and the infection/fever I just had, but it is hard to sort out what is from the mito and what is from meds. I was on Provigil last spring, but stopped it when I was having trouble with anxiety in case it was contributing. Well, we decided to give the Provigil another try. I need to do something to help me function & go to school/work, so hopefully this will help me wake up a bit.
Then we talked about my walking and how the left leg stuff seems to be more neurological than myopathic. Well, sort of... I have weakness in both legs in the proximal muscles which probably IS myopathic, from progression of my mito. That sucks, but I've known about the myopathy for a couple of years now, so it's not like it's unexpected or surprising. But I also have some funky stuff going on in my left leg that looks more neurological, like upper motor neuron stuff (also probably from my mito, but from effects on my CNS, which is freaky). Really tight left calf (though both are tight), tight left hamstrings, left foot turning in & tight adductors, tripping over left toes not because of foot drop but because of the tight calf, and just plain walking funny. I have had a positive Babinski sign on that side off and on for several years now, but lately it is staying positive all the time. Plus ankle clonus, bilateral positive Hoffman reflexes and hyperreflexia throughout.
So we talked about the spasmy stuff and what to do (if anything). She knows that the Flexeril and others didn't work in the past, and that I've found that a pleasant side effect of Klonopin is decreased spasms. I take the Klonopin prn for anxiety. She also knows that I don't want to take the Klonopin any more than I have to because I don't want yet another drug that I'm tolerant to/dependent on, and because I want it to work when I need it for the mood stuff. So, with all of that in mind, she brought up Baclofen, since it works on GABA, too. I don't want to do it yet because it can make you sleepy & have cognitive side effects, which is the last thing I want right now while trying to give work/school a last-ditch effort to not have to quit. So she put it in her note and we will talk about it next month after we see how the Provigil and patch increase work. She said to call if things change or get worse before my next appointment and I can either come in sooner or we can start the Baclofen. We also talked briefly about other options for spasticity for down the line, like Botox and stuff, but I'm not there yet.
So, basically, we fixed my patch dose so I will hopefully need less of the oxy... we added back the Provigil to see if I can wake up... and she confirmed what I was thinking about "damn, this is neuro stuff, not just my muscles" and also made me realize that the spasms have got to be getting pretty obvious if she's pushing for Baclofen.
I have mixed feelings about today because she did offer helpful stuff... she was good about the pain med doses and the Provigil might help. But I hate that this neuro stuff and disease progression is happening... it freaks me out... and so while it was validating for her to agree with me about it after examining me, it was also just more evidence that things are getting worse, which sucks.
I've had pretty poor pain control lately and have been maxed out on my breakthrough meds on most days, so I finally let her increase my fentanyl patch dose after four months of saying no. We will see if that helps.
I also told her that I have been really sleepy and foggy and out of it lately, which I think is probably from the mito and the infection/fever I just had, but it is hard to sort out what is from the mito and what is from meds. I was on Provigil last spring, but stopped it when I was having trouble with anxiety in case it was contributing. Well, we decided to give the Provigil another try. I need to do something to help me function & go to school/work, so hopefully this will help me wake up a bit.
Then we talked about my walking and how the left leg stuff seems to be more neurological than myopathic. Well, sort of... I have weakness in both legs in the proximal muscles which probably IS myopathic, from progression of my mito. That sucks, but I've known about the myopathy for a couple of years now, so it's not like it's unexpected or surprising. But I also have some funky stuff going on in my left leg that looks more neurological, like upper motor neuron stuff (also probably from my mito, but from effects on my CNS, which is freaky). Really tight left calf (though both are tight), tight left hamstrings, left foot turning in & tight adductors, tripping over left toes not because of foot drop but because of the tight calf, and just plain walking funny. I have had a positive Babinski sign on that side off and on for several years now, but lately it is staying positive all the time. Plus ankle clonus, bilateral positive Hoffman reflexes and hyperreflexia throughout.
So we talked about the spasmy stuff and what to do (if anything). She knows that the Flexeril and others didn't work in the past, and that I've found that a pleasant side effect of Klonopin is decreased spasms. I take the Klonopin prn for anxiety. She also knows that I don't want to take the Klonopin any more than I have to because I don't want yet another drug that I'm tolerant to/dependent on, and because I want it to work when I need it for the mood stuff. So, with all of that in mind, she brought up Baclofen, since it works on GABA, too. I don't want to do it yet because it can make you sleepy & have cognitive side effects, which is the last thing I want right now while trying to give work/school a last-ditch effort to not have to quit. So she put it in her note and we will talk about it next month after we see how the Provigil and patch increase work. She said to call if things change or get worse before my next appointment and I can either come in sooner or we can start the Baclofen. We also talked briefly about other options for spasticity for down the line, like Botox and stuff, but I'm not there yet.
So, basically, we fixed my patch dose so I will hopefully need less of the oxy... we added back the Provigil to see if I can wake up... and she confirmed what I was thinking about "damn, this is neuro stuff, not just my muscles" and also made me realize that the spasms have got to be getting pretty obvious if she's pushing for Baclofen.
I have mixed feelings about today because she did offer helpful stuff... she was good about the pain med doses and the Provigil might help. But I hate that this neuro stuff and disease progression is happening... it freaks me out... and so while it was validating for her to agree with me about it after examining me, it was also just more evidence that things are getting worse, which sucks.