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asleep at mal 9/09
alumiere
Medical Update 
1/23/10 13:07
asleep at mal 9/09


So today I went for my first MRI. This was mildly terrifying and totally overwhelming.

My heightened sense of smell meant the office was barely tolerable; between the hospital smells, the fact that they were doing construction so there was drywall and sawdust everywhere and that smelled horrid, and the scent the MRI machine itself seemed to have, which I can only describe as electric I felt like I was being assaulted by scents. I think the closest I've been to the MRI scent is working in the electrical engineering lab in college, playing with high voltages over transistors, capacitors and such, or the scent of a tanning booth only much stronger. I knew this was going to be rough, so I thoroughly dosed my shirt with a calming BPAL, and even so I started to get nauseous as the technician was sliding me into the tube, and made him wait while I got some ginger from my purse.

Second attempt to put me in the tube was still frightening but I started counting breaths and thinking "purple" and managed to not panic completely. I've never in my life been claustrophobic, and the MRI was larger than the tanning beds I used to use in MD, so I don't know what that near panic was about. Hell, the space was less confining than the X-ray room at my Dentist's office, and I was lying down, without my head in a vice - it should not have been that frightening.

Then, the technician put a bulb in my hand, told me to hold my head still and that testing would take about 20 minutes and left the room. He had given me earplugs to put in, with a warning that the machine was kind of loud, so I was expecting the noise. But still it was overwhelming in a bad way. Worse than standing directly in front of the biggest bass cabinet at a rock show by far. The noises started in small bursts, then grew louder and more frequent, at times it felt like not just my head but my whole body was being pounded apart with sound. And the ringing in my ears that I've been struggling with since Lyrica fail? Still with me on top of the noise the machine generated.

As soon as I was done with the test and released from the machine I grabbed my stuff and bolted out of the office. I couldn't stand the scents or noises for another second, and walked down the street in the pouring rain looking for someplace to sit down and have a drink in relative peace until T could come get me. Walking hurt like hell, but focusing on that seems to have helped me calm down a bit.

Home safely, I tried to lay down and take a nap with T, but my head is utterly throbbing and has been since the test. It also feels like someone's punched me in the face a few times - my cheekbones hurt, my jaw hurts, my eye sockets hurt, my nose even hurts.

They said it'll be 3-5 days until they have results, so I need to postpone my neurologist follow up (currently scheduled for Wednesday). Monday is my EEG; I am going to see when they'll have results and call the neurologist to reschedule once I know; I don't need to see him without those test results being in.

Also, in the mail today I got a copy of my complete medical record from the thyroid/chronic pain specialist, including the result of the $960 lyme test. All the tests including the tests for co-infections are negative. I don't have lyme disease or any anti-bodies showing I was exposed to lyme or other tick-born disease at any time. So the month that I spent on anti-biotics? A waste of time and money. And those anti-biotics probably did a good bit to make the systemic Candidia worse, killing off the beneficial bacteria which kept it partially in check. I was taking multi-dophilis and anti-Candidia medications along with the anti-biotics but it didn't help much.

I'm happy it's not undiagnosed/untreated lyme disease, but I'd really like to know what the fuck is causing the memory loss, overly sensitive nose, ringing ears, and constant physical exhaustion. By the time I walked the 4 blocks to the bus stop before the test I was panting like a dog and dripping sweat even though it was ridiculously cold and raining in LA today. As I told stacia_devi in a chat yesterday, I'm getting used to the idea that the numbness in my extremities and the pain (Fibromyalgia + Repetitive Stress + Arthritis) aren't going away, and while I hate it I can learn to cope and compensate.

But the other symptoms - the smells, the overly sensitive skin, the ringing ears, the intermittent memory loss, the total lack of energy? I can't figure out how to cope with these too.

note: this was written yesterday evening but didn't post because lj was down. I slept ~ 13 hours last night, but the headache is still here, although my face feels slightly less pummeled.
Comments 
1/24/10 0:47 (UTC)
Have you added sacredjinx yet? You should.
1/24/10 3:37 (UTC)
I have now, although it seems like a shitty time to introduce myself given her most recent post.
1/24/10 4:18 (UTC)
Not at all. She may not respond right away depending on how she is feeling, but there isn't a good or bad time. You two have a lot in common, and it's something that very few people deal with or can understand. It's important that you connect with other people who "get it". It's important for her too.

When she's able, she'll get back to you. In the meantime you may get something out of her journal, and vice versa, I know she still reads sometimes when she's ill even if she doesn't write. You have tons of other things in common as well interest wise, so lame ass mystery illness is just one of many things you guys can talk about. She and her husband do amazing costumes and make up, and she feels the same way you do about clubbing and dancing, something she, like you, can only do on her good days. Not to mention she's hilarious and sweet and would be a good person for you to get to know regardless of your shared health woes. You can check out some of her make up stuff on her Myspace if it's public, she's on my top friends as sacredjinx, her hubby right next to her as approximation.
1/24/10 2:01 (UTC)
*hugs*
I still remember the MRI I had while I was being diagnosed in '98. I don't get claustrophobia but it was definitely overwhelming and overloading.
1/24/10 2:10 (UTC)
*HUGS* I had an MRI on my knees a few years ago, and thank heaven it was open MRI! They gave me headphones and a choice of music and even though I had it cranked way up, it did very very little to drown out the racket. I hope they find what is wrong, and fix it!!!
1/24/10 7:39 (UTC)
I have a confession to make...

When I got an MRI, it put me to sleep.

See, when I was a little kid, my mom had a keypunch machine in our house, and would work at night while I was going to sleep. The machine was in the room next to mine, against the wall that my bed was against. And the MRI sounds EXACTLY like the keypunch machine did. So for me it's a comforting sound.

My mom thought her MRI was the most terrifying thing she'd ever had in her life and she thinks I'm crazy for having fallen asleep. (So did the MRI tech.)
1/24/10 8:41 (UTC)
The Candida, tinnitus, exhaustion & memory loss sound like secondary symptoms of whatever underlying autoimmune disease you have.
(Screened comment)
1/24/10 9:49 (UTC)
Google those things -- they're all "symptoms." (I mean, sure they're diseases too. But together clustered like that? Nah.)

Did this stuff all start happening to you after you moved to LA? Or did you have it in MD too? I'm wondering if it's environmental. It fits heavy metal poisoning too, as I'm sure you know...
1/24/10 10:48 (UTC)
response too long; I posted it as an entry http://alumiere.livejournal.com/379201.html

Also, I'm going to ask about these things at my next appointments because I get what you're saying. My understanding is that the Hashimoto's thyroid is so bad it impacted my immune system as well, hence the Candidia. But verification and second opinions are always good. We're now up to 4 seperate Doctors working on this - at least until my insurance runs out.

Edited at 2010-01-24 10:51 am (UTC)