Chronically Something
Chronicles of Life with Multiple Sclerosis
When people ask me if I’m seeing anyone special, I just tell them the date of my next neurology appointment.
Ha! A good one for my neurologist to see. That’s what my body thinks because of all my problems.
Its been a while…
but I had a seizure tonight. Not sure if Its over doing it with the cleaning, or just a build up of several months of stress and what not. I wasn’t even sure it happened. I’ve had both partial seizures and full on Tonic-clonic seizures throughout my time with illness.. but it was clearly a partial seizure. I didn’t even realize it happened. I sorta lost time.. felt really out of it before, after, then felt ok for a bit before feeling shitty again. Didn’t do anything weird thank god. Last time I had a partial seizure was a year ago and I lit a cigarette in Kmart and put it out on my hand. heh.
So i’m not sure what this means or anything. Its over and from my previous seizure experience I know there isn’t much than another MRI they can do when this happens so I hesitated to contact anyone. My friend @wholegrainlofat, who witnessed the major Kmart incident, came by later (after being here helping me clean and noticing I started being weird) and could tell by my pupils that something had happened. ugh. Still, I’m feeling a bit better now but decided to be responsible and called the on call doc at my Neuros office.
Its weird since I have been dealing with so many other MS symptoms and what not but the seizure stuff has been outta the picture. Sorta wonder if this is the build up of all the stuff I’ve been “over doing” for the last 4 months.. or the fact that I was spraying polyurethane on a cool stick I found that I wanna paint today but its windy so I probably inhaled some of it. hah. anyway. So that happened. sorta brings me back to the “what demon am I fighting” post but also has made me think I’m over stressing myself WAY too much and that might be why this is reaching a critical mass.
either way I don’t know what the hell to do but.. I think maybe I will find a way to use this for some sort of perspective tomorrow after talking to the on call doc (that I’m waiting for the call back from despite my desperate desire to sleep) and having a good nights sleep. We’ll see though. I think maybe I can take my promise to be more positive and use this as a kick in the ass that I need to make that happen? maybe? sorta? I dunno. I’m trying tho!
So my veins really suck. During my MRI this morning it took 3 attempts to find one (including one of those fantastic moments where the nurse sticks the needle in and just wiggles it around until she either finds something or gives up and moves to another place). So that wasn’t the most fun, especially combined with the MRI.
An hour or so after that I had my appointment with my neurologist. The good news is, I’m JC negative! wooo! So I started the paperwork to switch to tysabri. Being JC negative for now it seems like low enough risk that despite my special luck (hah) the benefits outweigh the risks.
The bad news, on the other hand, is my MRI showed new disease activity. boo. I figured that was the case since I’ve been having so much pain, numbness, and am falling down a lot. So? I’m on 3 days of IV solu medrol! FUN!!! They went ahead and gave me the first one since I was already there but I come back tomorrow and Wed for the rest. Hopefully this will help (and not make me as puffy, hungry, and moody as it normally does.. yeah. right). I’ve already reached that point where I’m reasonably sure I haven’t blinked in 10 minutes. Awesome!
The more important part of the bad news is that the nurse at the infusion center had just as much trouble (more really) as the MRI tech. 3 needles and 5 attempts to get it in. she got so frustrated after thinking she got the 4th try in that when she saw it bubble up with saline she just left it there. haha so for a good 45 minutes I considered if I could use that extra one for something fun like subcutaneous coffee or fast acting gin and tonic. haha. opted out of that thought eventually. Thankfully, as you can see, BP was there to make sure the rest of the process went right. Always helpful that stuffed sea turtle.
Thanks and an update
I just want to thank everyone for their advice, support, thoughts, and just reading this darn blog. I can’t tell you how helpful its been for me to write about this and touch base with so many of you that are (unfortunately) going through so much of the same crap.
So after reading and writing and posting I had my appointment today. It wasn’t so bad. I’m pretty exhausted and achey today so I won’t go on the rant about how amazing it is to have a great doctor that you respect and you feel respects you. Its only been a couple months but the differences is beyond words. Anyway, I decided that if I’m sticking to injections I’m going to stay on the copaxone since the others are generally intolerable to me (side effects wise) but that this will just be until I complete all the testing for the other medication options. I’m almost totally leaning towards Tysabri after reading, talking to everyone, and talking to my neuro today. That is, we both agree switching to tysabri is a great plan…. as long as I test negative for the JC virus (which having increases the risk of brain infection a TON statistically speaking ..hahha I like to make the former statistician in me twitch). Anyway, If I test positive for the virus (which is not unusual) I am not at a critical mass quite yet that its worth risking a brain infection. In that case I’ll be taking my chances with Gylenia. I had my blood drawn and we’ll find out 3 weeks from now.
In other news my usual neuro exam showed some dramatic weakness in my right side (arm especially) which oddly enough I didn’t list as a major new issue for me. Guess all the aches and shock pain and muscle cramping made that seem unimportant. So due to that weakness, and the increase in pain, I’m scheduled for another MRI in Mid November (had one in sept.) and my doc has put me on Baclofen for the muscle/joint/ pain. I’m still reading about it but it seems to be a muscle relaxant of sorts. Not thrilled about more meds but that really pales in comparison to the joy at potentially getting some relif from this pain and from having a doctor actually listen to me describe my symptoms and not look at me like I’m nuts, making it up, or whatever and actually trying to help!
So following all that I went to the RMV to get my placard only to realize after an hour of waiting (cause I’m slow) that I was supposed to mail it in. So they did that for me and I came home and collapsed on the couch. So now I’m gonna try to make that collapse some sort of sleep hah. Wanted to thank you all again. You rule! <3
Soliciting your thoughts! Med Advice?
So first off thanks everyone for the support after the previous post. I might not be mary sunshine but I’m getting back to the “kicking ass and taking names till I pass out” version of me and I like her better most days so I’m going with it.
But, in all of my crazy I’ve avoided the big medication decision. Copaxone isn’t really keeping the progression at bay so my doctor wants me to think about other meds. Had a month to think but kinda ignored it cause its scary and here I am a day and half before my near appointment and no closer to a decision.
I’ve done lots of reading and research but none of it is really all that helpful. If anything its scary. So I thought maybe I’d see what you all think about your meds, if you have any anecdotal evidence, thoughts, complaints, anything that might help me make a decision.
So! My doc discussed the following options with:
Avonex: Self injected chemo (w/ immediate debilitating side effects) & all that comes w/ Chemo. was on this before (rebif aka my personal hell) but this wld be 1x a week instead of 3 (my reactions to rebif were so bad I just quit taking it after not being able to move for most of the week while on it and ending up in the ER with low BP and The damn drug made me feel like my life had ended).
Gilenya: a pill (no injections YAH!!) but causes extremely low BP (which I have already) & lower heart rate (which I could use a good reduction in since I’m borderline tachycardic) also w/ Back pain, diarrhea, headache, hair loss, weakness, & increased likelihood of liver damage & cancer (not so good when I’m a smoker, and have a history of cancer in my fam). Also some mentions of weight gain which I’m really not interested but realize is the least of the issues here.
or
Tysabri: a monthly transfusion that has a risk of fatal brain infection. Would obviously get tested for the JFC virus before deciding but thats some hard core scary stuff there regardless. And seeing as I’m sorta known as the bad luck girl by most friends and family its maybe not worth the risk? then again hearing about people feeling great after their infusions sounds amazing and having to deal with it only once a month is also pretty great..
I just don’t know. I am reading and reading and can’t decide. I could stay on Copaxone but its clearly not doing the trick since I keep having new symptoms all the time..
So i’m wondering if any of you might have experience to share?
anyone?! Thoughts? Bueller?
So I’ve been a bit MIA. My neurologist and I have been having a bit of a disagreement re: my symptoms. Since he is a bit of a failure when it comes to communication and letting me know what sort of symptoms are MS related and what aren’t I’ve been at a loss to figure out what is going on with me.
In my previous post regarding mental health issues I think I very strongly (heh) expressed my distaste for the need to blame any history of depression or anxiety for all the symptoms you ever experience and vice versa. Of course the stress of moving, having a chronic illness, etc is exacerbating much of my symptoms, I can’t believe that that and/or my sleep issues are the sole basis for the extreme fatigue I’m constantly feeling. I’ve been severely depressed before and I know how that fatigue feels. I was diagnoses with sleep apnea and now that I have my CPAP machine (which I’m not gonna lie I sorta hate) helps and the differences I feel when I use it or don’t. what I’ve been feeling, combined with the optic neuritis issues I’ve been having lately, and the incidents of low blood pressure, do not match my experiences with either of the above. I don’t have a medical degree (though i’m on my way to becoming a doctor of a different sort) but I know my body. It just doesn’t make sense.
My doctor received the results to my cognitive testing and, instead of seeing me, called me for a 5 minute chat in which he said “see you’re fine” which is odd because the results showed a pretty big decline from my previous testing 3 years ago. When I expressed my concern over the current issues I’m having he simply said “oh well maybe its your depression meds (which to be honest are needed due to stress over all this crap) or your sleep apnea.” I asked if he could discuss what symptoms I should be experiencing due to the lesion placement ext. and he said “your lesions are fine” huh? my lesions are fine? right. So after a frustrating and useless conversation I was scheduled for my 3rd sleep study.
All of this is to say, I had an extra exciting saturday night at the hospital. I have to wonder how they expect anyone with sleep issues to sleep with all this shit attached to you. The nurse was especially strange telling me I didn’t seem fat enough or old enough for sleep apnea (thats a post for a different blog) and even after 10mg of ambien I slept about 2 hours and tossed and turned all night long trying not to choke myself on all the wires. It was good times.
Don’t I look extra hot? hahaha
About Me
Thoughts, ramblings, and unsolicited advice about life with Multiple Sclerosis / Chronic Illness, by me and other people on the internet.
Because sometimes it feels good to be able to say "oh man I can relate".
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