moocowinthecity Getting real sick of your shit #neurology… #er #neurononsense #ffs
Getting real sick of your shit #neurology… #er #neurononsense #ffs
Neurology
Like Losing a Superpower
My entire life, I have had ADHD, OCD, and TS (collectively TS+). My ADHD has been kept in check by my OCD, giving me just infinite amounts of energy; which I now find drained, and randomly sucked out of me during the day. It’s like having a power cord pulled out of me, randomly. I almost fell asleep while doing counseling with a client the other day…and I have to say it’s like losing a superpower. I’ve always had more energy than everyone else, and I mean a lot more energy…and if this is going to be my new reality (and we’re waiting to do the muscle biopsy, and then of course, find out the results of all of these tests) then I’ll learn to navigate it…but right now, I don’t know how, and I’m having to learn how to readjust…everything…how much I can get done in a day, how much I can do before I have to stop, how much I can do before I have to nap…
It’s giving me a world of insight into some of my client’s lives…and that’s the positive I’ll take from it; but it’s also scary as fuck, and answers can’t come soon enough. Friday I get a giant needle in my leg, and then next Tuesday I better have some answers.
#neurology
Updates from the Neurologist, Cardiologist & The Lab (By Way of Letters & Numbers)
-=LAB PART THE FIRST 1/30/2017=-
A) I went and got my HIDA Scan with CCK. I didn’t realize that’s one of the ones they irradiate you and make your organ light up…that was pretty neat…until they injected me with the enzyme that made my gallbladder fill up and empty, repeatedly…and I really wanted to just shit the table…but I did not, because I am…sort of…adult-ish…at times…but like 99.99% that fucking gallbladder is getting evicted.
B) I don’t think they’ll let me keep it in a glass jar on my desk
C) I did not get bitten by a spider, and – despite cuddling next to Akiva all night – I did not wake up with cat-like reflexes, or any kind of cat-like superpowers…I am just as clumsy as ever, and sadly, will not be joining #TeamCap anytime soon (#FuckTonyStark)
-=NEUROLOGIST 1/31/2017=-
1) I explained I was feeling a bit tired, going up and down stairs etc, and wheezing. Her husband shares her practice and has his cardiology practice there, so I was sent right in (after I was done with my neuro) for an echocardiogram of my heart, and arteries. I’ll get results of that…when I get results of that…maybe a week-ish. I also explained that I did army, two NCO courses, world travel, hiking, etc. while fat, so I donât think it has something to do with my weight…because I’ve been active at between this weight range and another, for years.
2) She explained she was sending me to get the muscle biopsy because of the high CPK/Aldolase numbers, which is what I guessed.
3) I asked her what she expected to find/not find; she as honest and said mostly that she didn’t know, she really just needs to see what’s there, and the reason for this surgeon is that his samples are always good, especially around nerves, and don’t need to be redone.
-=CARDIOLOGIST 1/31/2017=-
4) I was then sent for the cardio stuff, it was cool to see my heart on a screen; I love when science and creation (like, humanity, like, does my heart know I can see it on screen, not the Jesus made the dinosaurs in school kind of science-creation) mix, and you get to see your body work…totally awesome, and because I was interested, the tech explained everything I was looking at, and the sounds and videos she was recording and why.
5) I had a good nap when I had to lay on my other side for the other artery and couldn’t see the screen.
-=LAB PART THE SECOND 1/31/2017=-
6) I was sent for more bloodwork (Fucking. Vampires). Me and Catholic Health System are now BFF. I’m getting signed up for their Patient Portal tomorrow, or Thursday; but until then, I have copies of everything sent to my neuro, and my primary…I have it sent to my primary because he has it set so that all tests automatically just post to the patient’s portal, whereas my neuro only posts what she’s reviewed (and I wanna see what’s going on).
7) They did a bunch more tests than they have done before
8 ) They ran CPK, Aldolase, Esr, RF, Ssa, SSB at the lab when they drew blood. Iâm now waiting on results (though a few have come back).
9) One of the tests that have come back is the CPK (Muscle Enzyme) which today (on a day where my legs have been bothering me) is, surprise to no one at all, except me a bit, because you know, everything that’s non-visible is all in our heads: CPK today is 477. (Max range, of course being 174. Worst score to date, 627; Best 250). Bookies are now taking over/under bets for two weeks from today (see below).
-=BACK TO THE NEUROLOGIST (Still 1/31/2017)=-
10) I learned that the Aldolase thing she looks for is what makes the CPK relevant to muscles, and not for instance, heart muscles, or lung muscles. This is why the surgeon’s going to take a piece from my leg, or my upper thigh/hip/booty. MY UNCLE THE DOCTOR says that it’s less painful than some of my tattoos, and that the neuro is handling this the best way (in steps) rather than scattershot (more accurate differential diagnosis).
11) The neurologist was about as concerned as I was that Aldolase, on good/bad days has been pushing the upper limit of 8.1
12) I reminded her she was going to speak to my Nurse Practitioner, and she said she would also call the surgeon to move things along.
13) She must have at least called the Surgeon, because I have the date for my muscle biopsy: next Friday, February 10th.
If you want to start collecting stats for over/under the 174 max threshold :
Date CPK
1/31/17 477
1/17/17 250
1/3/17 627
$10.00 minmum bet, Vincent’s handling the pool.
-=2/2/2017 Updates=-
i) My gallbladder results came back; looks like it is coming out (I’ve been called in to discuss the results); but we’ll see. My appointment for that is on 2/13 (a couple of days after the Muscle Biopsy).
Lab results are as follows:
#neurology
Additionally…
Positive confirmation on Spinal Stenosis, and on Meralgia Paresthetica. Additionally, the current working diagnosis for the shitstorm I just posted about is Myopathy, unspecified.
#neurology
Neurodiversity
So I woke up on New Years Day unable (or barely able) to move/ambulate. I wasn’t able to push myself up easily, I was barely able to sit up; I had low to no use of my hands, and I had to use my cane (with great difficulty) to make my way slowly to the bathroom…sitting down on the toilet and getting up was hard…later, when sitting on the couch, I didn’t have enough muscle strength to push the footrest down, I had to wait for a friend to help me…it was like being a very large, very shaky, very weak toddler.
I went to my Neurologist two days later (I had an appointment already scheduled), and I was immediately sent for blood tests. I had my follow up appointment today. Two days after the incident (when my blood was drawn) my body showed elevated muscle enzymes. The max boundary according to the labor report is 174. The enzymes in my body were at 627.
They took more blood today (a good day, where moving is easier) to compare it to (important for a differential diagnosis), and according to the lab results which came in tonight (since they were sent in with a big ole STAT written across the bottom) my levels today (on a good day) was 250…still much hasher than 174, though better than 627.
So I may (actually, most likely will) have to have a muscle biopsy (which is good, because it can rule out/in definitely something terrifying, like Muscular Dystrophy, which can be a potential diagnosis); but I have been told by my uncle (a very competent physician, who I called to discuss my results with) that there’s no chance this is related to my ever-soon-to-be-evicted gallbladder…so wishful thinking is more-or-less off the table.
This is, sadly, one of those things where there is going to be a battery of tests, done in steps, there are no easy answers, things have to be ruled in/ruled out; more tests have to be done, etc. until it’s figured out.
However, this (or fear of this, when I first started noticing symptoms) is also why I decided to apply to the MSW program…because I can do case management now, and my plan is to go into counseling…and I can sit down on a chair and talk to people who sit down on a chair or couch, and provide counseling (and do notes using adaptive software) if things get really bad…and if things get extra bad (like, requiring breathing equipment that scares clients) I can always transition into Macro Social Work, and do data analysis, etc.
So things may be as simple (I hope) as taking a pill, or some kind of easy explanation, or some kind of continued easy accommodation like days where I need to use my cane (sadly, I’m not on a statin drug, which could have explained this)…or it might be more complicated…or more scary.
So I’m taking this as pragmatically as I can, knowing that whatever accommodations I need, I have friends (many, actually) who work with/in adaptive technology fields, I am connected as an MSW student and current Medical Case Manager, and I have friends and family who will make sure we handle whatever this turns out to be.
For now, I wait.
#neurology