State of the Mrissa Report: after the EEG

[mrissa]

So. My brain is normal. Stop laughing! I have medical confirmation!

Okay, he did not actually say normal, he said within normal parameters. Still: no seizure disorder or other anomalous brain activity recorded in the sleep-deprived EEG.

This is a good thing.

We have a plan. This, too, is a good thing. The plan is:
1) Thorough work-up at competent dentist
2) Return to ENT for more in-depth test as discussed with Dr. porphyrin, who is a Hero of the Revolution, a Flying Squirrel Diva of the Jovian Moons, and any other honor we can dig up around here.
3) See an additional, more specific neurological clinic that may be able to rule out more funkiness because of their greater experience with funkiness.

See what a plan it is? It is a plan. It does not involve me taking mind-altering medication for a condition I am not on record as having. And why does it not? Because I was polite but firm with the doctor and made him consider other options. Because I am well enough and of a personality type to stand up for myself. It bothers me that this was necessary, because not everybody is that well, and not everybody has that personality. I liked my first neurologist better. There's nothing wrong with this guy. I just liked the other one better. He (that is, the missed first neurologist) looked like autopope (in hair mode, not bald mode) if autopope had been Quebecois-Minnesotan. Also he listened to me and paid attention to what I said without me having to go into Marissa Lingen, Girl Physicist, geek smackdown mode. I can do ex-physicist smackdown mode. It's just wearing.

(Gosh. How many of my medical professionals can remind me of science fiction writers? My gp could be matociquala's sister. This is not a bad thing, though.)

More specifics are available on e-mail for those of you who want to know things like "what kind of more specific neurological clinic?" But this is as much information as I care to give on lj for the moment.

I am -- as I have been the past several days -- rather tired, and I intend to spend much of the day doing stressful things like watching "Red Dwarf" and poking novels with veeeeeery long sticks and reading a Spenser novel borrowed from dd_b.

Comments

[redbird]

This is a good plan.

I am glad that "within normal parameters" counts as a Good Thing: when, some years ago, I had that result from a diagnostic MRI, it translated as "yes, we can confirm your hypersensitivity to bright lights and the occasional stumbling, but the causes are too subtle for current medical technology, have a nice day."

More details by email would be welcome.

[mrissa.livejournal.com]

I will get to the e-mail later in the day, but I have not forgotten.

[wilfulcait.livejournal.com]

Can you get them to get you a "Normal Brain (Within Parameters)" certificate to hang on your wall?

Congratulations on not having a seizure disorder, and on avoiding meds that treat conditions you don't have.

[dancingwriter.livejournal.com]

So happy to hear your EEG results, and best wishes on further progress through The Plan.

[ckd]

I like the sound of the plan.

I particularly encourage step 0, the spending the rest of the day taking care of the mrissa.

[mrissa.livejournal.com]

I actually have this as #0 on my "to do" list: "Take care of self and family."

[oracne.livejournal.com]

Yay RED DWARF!

"Got YOU, Chicken Marengo!"

the doctor thing

[aet.livejournal.com]

It seems, somehow, to be a doctor thing to try their thing on patient ANYWAY.

In my case it was a pacemaker - the doctor in case DID tell that probably I would not really need it , but as he had not attempeted to but a pacemaker into a younger (I had just turned 30 then)patient and at least I would not have to feel scared should my heart stop (even if it WOULD start up on its own anyway)...

Actually, as long as he did not want to add unnecessary machinery into my body, the man was quite fascinating and eager about his profession.

[rysmiel.livejournal.com]

if autopope had been Quebecois-Minnesotan.

You just broke my imagination.

[mrissa.livejournal.com]

Oops! I'm sorry; I expect you'll want to use that later.

[ellameena.livejournal.com]

Empirical therapy is not always a bad thing, television medical drama notwithstanding. But I'm glad you were able to decline a treatment that didn't sound right for you. I'm also glad that there are more options for looking at ENT problems. It sounds both less alarming than neuro, and it seems like it could explain everything. *crosses fingers*

[mrissa.livejournal.com]

[lj ate my first attempt at saying this]

I've had a friend recently benefit from exactly this kind of empirical therapy. But it was for a condition that had many more of the hallmarks of the condition the drug is supposed to treat. I don't think she made the wrong choice for her, I just don't think it would have been the right choice for me. (Some of the reasons are in my reply to dreamshark below.)

Go, weirdly asymptomatic sinus infection! Woooo!

[ellameena.livejournal.com]

Well, and every specialist will treat within their own specialty. Go to a neurologist, and he'll come up with a possible neurological diagnosis. If you went to a podiatrist, he'd give you shoe lifts. The shoe lifts have fewer side effects and risks, IMO. :-)

[(Anonymous)]

Hah ... Now all of your friends can make fun of you for being normal :P Oh wait, this was the neurologist not the psychiatrist :)

[cadithial.livejournal.com]

Doh, this was me. Switched to firefox and didn't realize I wasn't logged in.

[ladysea.livejournal.com]

*hugs* Yay for "normal".

[truepenny.livejournal.com]

I am glad your brain is within normal parameters. (At least in this way.)

And huzzah! for having a Plan.

[dreamshark.livejournal.com]

From my second-hand experience with seizure disorders (2 siblings and one spouse) I have learned that it is sometimes possible to diagnose disorders by medication that don't show up on lab tests. By all means, pursue the more specialized testing if that seems likely to be helpful, but just in case it turns up nothing and you continue to have symptoms, I just wanted to mention this.

Although I wouldn't want to take Dilantin long-term unless I really needed it, it is not a particularly dangerous drug and the side effects are rarely serious. If you tried it for a month or two and the dysosmia immediately cleared up, that would tell you that it was probably a minor seizure disorder. You could then decide whether you wanted to continue with medication, find a different solution or live with the problem.

[mrissa.livejournal.com]

The main thing about this illness that messes with my life is the fatigue. Dilantin has major side effects of making people sleepy and/or less alert. It also can mess with people with blood sugar problems (I'm hypoglycemic), can make oral contraceptives less effective, and can make people who are prone to it dizzy (I am prone to it).

If my taste/smell disturbances were behaving at all like seizures, we might decide to get around all this. Might. But they aren't behaving like seizures in any way except that they're short on explanations for why I'm having them at all. So taking a medication that reproduces the major current problem (the fatigue) as a side effect -- plus has other side effects that more directly relate to concerns in my life and health -- just doesn't seem like a good idea right now. We may get to the point where we have more reason to try it, but we aren't at that point now.

[dreamshark.livejournal.com]

Your reasons are good ones. I'm not trying to tell you what to do, just provide a little additional information.

Tiny localized seizures can cause disruption of any sense, which is why I guessed that the dysosmia was the symptom that made the doctor suggest medication. But if that's not the main problem and the side effects of the meds would aggravate the bigger problems, that would clearly be a silly thing to try. I don't blame you for getting annoyed that your neurologist didn't seem to be listening to you. Congratulations on making sure that he started.

[buymeaclue.livejournal.com]

Yay for normal-according-to-EEG-brains! Boo for non-easily-curable diagnosis, but yay for no seizure disorders or other such things!

I hope the plan is a successful plan.

In other news, it may amuse you to know that our frogs at work now have a raft. Our frogs at work _adore_ their raft.

[mrissa.livejournal.com]

Awwww. That's fabulous.

[greykev.livejournal.com]

But did they look at the results through a green filter?

(sorry; Red Dwarf + brain stuff = Zaphod reference)

Glad to hear you've eliminated another thing, and still have avenues for searching.

I'm curious how broad the 'normal parameters' are, it sounds like a rather suspect phrase to me. But then, I'm the suspicious type.

[scottjames.livejournal.com]

I'm curious how broad the 'normal parameters' are, it sounds like a rather suspect phrase to me....

...because if mrissa is normal, then it must be a really broad range?

[greykev.livejournal.com]

Because 'normal parameters' might run from 'no electrical activity' to 'on fire' and they could plesantly tell you you're 'within parameters' without having the faintest idea what was happening in your brain.

as for M'ris's normality, there is no 'normal', just usual and unusual. M'ris is a very unusual person, and we lover her for/despite that.

[mrissa.livejournal.com]

Every test has normal parameters. There is no one true norm of human experience. There's always a range. Well, almost always.

[scottjames.livejournal.com]

Feel free to tell me as much/little in the way of further details as you feel appropriate. I am, as always, here to help (despite not always being helpful). It's not that I don't want to know, it's that I don't want to create a burden upon you to tell me.

I hope porphyrin appreciates being a Flying Squirrel Diva of the Jovian Moons. I certainly appreciate her being one.

[greykev.livejournal.com]

Flying Squirrel Diva of the Jovian Moons

Was this from the same e-mail as the benzel bromides digression? Damn I wish I'd saved that one.

[mrissa.livejournal.com]

I will include some stuff in my next e-mail.

[dsgood.livejournal.com]

Happy for the good news, hope testing turns up something specific that can be treated!

[mrissa.livejournal.com]

Well.

See, people who know me well -- or even people who know me moderately, actually -- find it very hard to believe that anybody would make the mistake of treating me like I'm stupid. But some people initially look at me and see a cute little thing who shouldn't have to deal with big words. And then I have to quietly and firmly hand them their asses.

With many doctors, the phrase, "My degree work was in nuclear physics, so you can speak as though I have a brain" does the trick. They rear back, and then they start talking about things like the absolute levels of a hormone in the bloodstream versus the first derivative of that function.

One of the things I like best about my own doctor is that I never had to be snotty or sarcastic to get her to talk to me like I was not going to run screaming at the sound of chemical names.

[mrissa.livejournal.com]

For some people, the math is very simple:

Thin Young Woman + Tits = Speak Slowly

My math is also obvious there:

My Boot + Their Head = Good Idea

It's different with doctors who go in with no preconceptions about the patient's knowledge or intelligence; those people I understand and deal with as reasonable people. But I don't care to have people assume I'm stupid.

[kalmn.livejournal.com]

some days being within normal parameters sucks. i had a pretty reasonable mri except for the part where my blood vessels didn't get the "hey! no longer fetal!" note in one spot. however, i can still hear the ocean my pulse in one ear, and further testing will be to assuage curiosity, not because it's treatable.

on the other hand, now i feel unique because i have not one but twooo forms of tinnitus. go me!

[mrissa.livejournal.com]

Yah, sometimes uniqueness is very cool, and other times it's a bit overrated from the inside.

[blzblack.livejournal.com]

Hoorah for normal parameters! Good to hear. Keep the plan.

[callunav.livejournal.com]

I believe you about your brain being normal.

I do. Really.

I'm *awfully* glad you have a smackdown mode you can access, even if it is wearing. I'm usually good at it for myself, and especially good at it for others. (heavenscalyx refers to it - with respect - as my gorilla suit. Or possibly my guerilla suit, I'm not quite sure.) But I had some experiences in the past year of exceeding the limits of my self-advocacy with the medical world, and bitterly regretted the times I wasn't able to intervene firmly on my own behalf. So I know what both sides of that coin look like, and I'm glad yours came up heads.

Your reasons for not wanting to go on the med, especially not before doing other things (like your excellent plan) are cogent in the extreme. How annoying that your theoretically intelligent, indubitably educated care provider had to have them pointed out for him.

Here's hoping for a wacky, highly curable sinus infection. That sounds like a great diagnosis.

[talimena.livejournal.com]

Yay for a plan and a normal brain!