shoe

Ah, yes, got the careful with the fluid talk... It's something I'm so paranoid about anyway (water intoxication -- my dad works with people who have had traumatic brain injuries, and I've seen/heard of what the clients he works with have gone through with that). That paranoia was one of the reasons I was trying SO hard not to drink so much even after I was going so much... because I knew it wasn't right, but I actually felt a lot better when I did... But since my "thirst" sensor seems to be busted a bit (just like my "full bladder" sensor is off) I know it'll be tough, and I know I'm more likely to screw up on the side of dehydration. Yes, totally getting the MRI. Between the CDI and the facial palsy, I'm glad that we're getting one done that is looking especially hard at the problem area (where I guess they don't always look). I am sure I've had some kind of dysautonomia forever (or at least since my early teens) -- but something in the past few years has made it a lot worse and a lot more variable on a cyclical basis -- and I don't think at all that it's merely some change in the way the dysautonomia is affecting me. The sooner we can get that figured out, the better off I am -- no matter what it is, y'know? At least if I know, I have a shot at dealing with it. Just looking forward to having maybe a few hours at a stretch with out needing to run to the bathroom!

So I had my follow up with the endocrinologist today. He started up with, "I have an answer!" and I said, "Give me more of the DDAVP, NOW! NOW!" and he said, "Ah, it helped?" I have to say, I think this is the first time ever I've gone into a doctor's office, on the second visit, and the answer the doctor gives isn't "You need to see a psychiatrist." I have diabetes insipidus, neurologic origin. I'm not quite grasping the difference between partial and complete, save the severity/length of time. He's sure it's not complete, but it's very clearly DI, and the response to the DDAVP injection was enough to show that it was central, and responsive to the stuff. I guess my plasma osmolality wasn't horrible horrible (as in, indicated partial over complete, but definitely abnormal) and my urine before the injection was 247 mOsm/kg. Afterwards, it was 370 mOsm/kg. Starting me on DDAVP tonight. It'll just be nice not to be slave to the latrine and AquaFina, if you know what I mean. MRI is being scheduled currently. He is encouraging that we get a copy of it ourselves and bring it to a neurologist to look at as well. Our toilet paper budget can now be used somewhere else!

Hi, I agree with ajw4005 -- everyone reacts to stuff differently, and I think stimulants are some of the doozies in terms of range. I take Concerta ER 54 mg in the morning and 3 doses of 10 mg Ritalin. Basically they're all a form of methylphenidate, they just attach to different receptors so have different arcs of effects. Here's why I take what I do: The Concerta is methylphenidate HCL (a longer acting, slower release form of Ritalin). I get up, and if I weren't to take my meds in 20-25 min., not only would I have to lie down, I wouldn't even need a convenient bed. The floor would do. (Oddly, it's not a tired thing -- I could sleep, but more I need to lie there with my eyes closed.) The longer acting (ERs, XRs) I found didn't really have a good "wake up" effect on their own. The plus is that they're slower release, and less of a tendency to crash you out. So my sleep doctor (a neurologist certified w/sleep medicine) said to take 10 mg of Ritalin w/the Concerta, then 10 mg in the early afternoon, with the last 10 mg to not be taken later than 2 pm. (Many people have disrupted sleep. I can actually fall asleep if I'm really doing awful right after a Ritalin dose. I found I sleep slightly better with it, because I'm able to spend less time in bed during the day). The idea is that while the Concerta kicks in, the Ritalin gets me feeling all right faster... and the background of Concerta keeps any "wearing off" crashes at bay. Now... my understanding is I'm taking a colossal dose. To the point that I've had a few doctors, when I tell them what I'm taking, say, "Why aren't I peeling you off the ceiling?" There are a few drugs that have really had a hugely positive impact on my life -- the stimulants are one of them. They can cause heart racing (I find it can slow it, too... I do not react well to overtired), anxiety... I've just found they've given me a shot at a few more functional minutes a day. I'm not sure how well they're supposed to work with chronic fatigue/CFIDS type stuff. I've heard it can make people with it further behind the eight ball, but again, there's a wide range of reactions to medication like that and CFIDS is a pretty unexplored territory at best. I've had a good experience with the stuff, personally. I'm not anywhere near where I should be, but it gets me closer, and I haven't had any real ill effects. If you decide to give it a try, start slow, hopefully on a day when someone else is around to make sure nothing odd happens. I think non-sleep (or psych) doctors have a slightly irrational take on how powerful or far reaching these sorts of meds are. Taken as directed (and paying attention to how it effects you) they're pretty safe and don't stay in your system too terribly long. I'd give it a try. If it's a generic, it's probably a cheap enough rx to fill, and if the first day or two doesn't pan out (you'll know that quickly), then you'll know it probably isn't the right thing for you to be taking.

Ooooo! That's good to know! Thanks. I hope it doesn't decide to ambush me after I go to bed. I wondered... I'm peeing, but not anywhere near the volumes I was (and less often, but happily water intake isn't needing to be what it was) and I was wondering if it'd be a gradual thing or if suddenly my bad self would notice there was water floating around and just let er rip. Maybe my husband should wear a raincoat and wellingtons to bed. Or build a dam? Thanks for the info... VERY good to know.

A trooper! Yay! My husband's take has been, "Jeez you're obstinate." He told my doctor I'm the old time New England fisherman who comes in to an appointment with an arm ripped off and asks if maybe they can spare a bandaid... Thanks all... I think the worst part to wrap my head around was that my husband hadn't drank anything during that time period (at least, he said he didn't... He was probably afraid if I caught him I'd have tried to tackle him) and he wasn't feeling much of anything but a slight caffeine headache and he visited the restroom twice in that period. There was no good reason for me to feel that awful except that something was now all too undeniably busted. And it only got really horribly ohmygodI'mgonnadie awful an hour or two before they were planning to do the DDAVP injection, so I didn't want to just scrap it and have to go through it again. Heck... Now I want to go in tomorrow and shake them down for some DDAVP. Today... since the injection, I've had 4 16 oz bottles of water. I am peeing every couple of hours. It's still hard to do a whole heck of a lot thanks to other health stuff, but it's so liberating to not be stuck on the toilet, or, when not within arm's reach of a bottle of water, hope that I don't suddenly tank and feel awful again. (I have a hard time on the computer... I have a bottle of water, I get involved... try to drink between thoughts, but inevitably don't do it because I'm distracted and suddenly I'm in nasty pain and getting tunnel vision). I know soon enough that the DDAVP shot will wear off, my last trip to the bathroom was colorless again, so I'm imagine the "bladder attack"'ll be coming soon... But I have my follow up on the 11th. I'll let you know the numbers, firewatcher... I know this isn't something you can eyeball, but the pre-injection urine sample looked a similar color to the one I did initially that was the 144 mosm/kg. The more I think about it... (I guess I was trying hard not to)... the more stunned I am about how much I am actually having to drink (and still feel like I'm playing "catchup"). Maybe we won't have to put out 3 recycling bins of water bottles every week after next week (I know, bad and wasteful... and tap water is just not cold enough.)

Well, just got back from the hospital after the water deprivation test for diabetes insipidus. Endocrinologist thought it'd be okay to do the first "deprivation" part at home and come in for labs, DDAVP shot, and then another lab. He figured that I was not in danger of keeling over (especially with my husband here) and that if I had to drink, I'd have let him know and we'd do it inpatient later. First, it went like I thought in terms of deprivation -- I stayed up till about 11:15, when I had my last drink and then went to bed. I ended up peeing -- five times before 7 am. And as I thought, at 7 am, I started to really really pay. Muscles twitching, headache, just felt crappy. I went to brush my teeth (careful not to swallow water) and I guess my mouth was so dry my gums bled immediately. Through this, I didn't feel thirsty, just crappy and dry. I was supposed to get the DDAVP at 9, but I felt so crappy and I was almost there... It seemed a shame to stop NOW, so I said to my husband, "Let's go." Second thing: if you ever have to take this test and are given the choice, outpatient might seem a nicer arrangement... It isn't. If I had it to do over, I wouldn't have done it this way. I felt like a weenie. I felt SO cruddy. I get the blood draw (she got a vein and the tube filled decently enough, but she shouldn't have wasted the gauze. I didn't bleed.) I give the urine sample. By the time I got to the lab at 8:10, that was the EIGHTH time I peed (and hadn't drank since 11:15 pm). Let's say I could have filled three or four sample cups. Urine very light, but it has a color... I get the injection. I was in screaming pain. Dry, muscle twitches, back killing me, head killing me, just eeech. The endocrinologist was nice. He just ran through the waiting room and he waved to us (he's seen me once, and recognized us and asked if I was doing okay with it... Told him I'd been better. He said, "You're almost through.") So I asked with the injection if I could have a drink. They asked the doctor, and he said just a little bit. So I went to the cafeteria, drank enough to choke down my meds and had an actually surprisingly okay muffin for originating in a hospital kitchen. Lo and behold... The few sips of water were enough that I was feeling better even before my pills kicked in. I mean, markedly so. I waited a little over an hour, gave the last urine sample. It wasn't really colorful (then, I mean, that wouldn't have been so good either, I guess), but for the first time in what seems like eight hundred urine samples, it actually (sorry for the gross) smelled a little bit like -- what was it? -- urine? It smelled slightly like urine! Now about two and half hours thereafter. I haven't peed again, and I've only had a few more sips of water. And I don't feel like I've eaten all the dessicant packs out of the pockets of the down jackets at Burlington Coat Factory, even. I get the results next week. but I am guessing that it's probably central because... well... this wouldn't have happened. I know the actual rendering of results is rough, and that central is probably going to lead to -- yeah, your brain is weird... But it's good to know and since I have so many screwups that seem to originate in the hypothalamus/pituitary areas and it isn't necessarily what MRI radiologists center on, maybe something else'll be clear. For now, liking I could go two hours without visiting the bathroom.

I am hoping it's nephrogenic, honestly. Because I know nothing I am on or have been on causes it, I know I don't have a genetic issue, and there's a set of systemic stuff that causes it that might help explain why everything got worse a few years back, and then worse nine months ago. I don't know if it'll work out that way, or if it'll be central and I will never know for sure. The issues with this are two with me: It's an unbelievable handicap to either need to have a water bottle, or a toilet, or, no lie, both at once. If I have a bottle of water, get up, and spend twenty minutes loading the dishwasher or cleaning a countertop, I get tunnelvision, my veins pop up wildly, I turn bright red and have massive head pain, stitches... in 20 minutes of barely no activity. Sure, I keep drinking, I'm fine. It's a pain to deal with. Then... the other deal is doctors like to say it's in your head, just stop drinking. Or some tests require that you not have fluids... but if I don't and something's wrong like that, it could go pear shaped really quick. Sure, I'm fine if I can drink, but what if I am in a situation where I can't and the people around me don't know/need proof... So I need to know for sure, at the very least, and because it is such a pain, it needs to be managed. I feel like there is so much about how I feel out of my control, if I can get some kind of measure of control over ANY aspect of it, it's something. Maybe it won't solve everything, but it's positive to at least feel like things are being addressed. I guess, if my life from here is just a game of whack a mole symptom management, it'll stink, but it beats just sitting and not giving it a go. I think the only way I've made peace with any of the crud I've encountered is I know that even if the doctors aren't always giving it their all, I can. That's the one thing I can do. The data points of tests might not mean much, now or ever. But if I can take this one little annoyance down a notch, I'll do it. I might learn something, I might not. It might just save some annoyance, and at this point in the deal, it's worth a lot. My butt has toilet seat imprints pressed on it.

I wanted the test mostly because it's a pain. The GP said I didn't need it, DI isn't the issue. The endocrinologist says it is the issue, and it needs to be done to be treated correctly. I started having to get up 3-4 times a night to pee. Then I started to dehydrate (it took a few months.) I mean, I am drinking at least 3 gallons of water a day. And night. I am peeing every half hour, and according to the hat it's always 400ml and up. It is only painful or uncomfortable when I don't drink. Then I lose my vision, blah blah. And it's sudden. It can happen, depending on temperature and time of day and what I might be doing, in an hour or less. I can feel fine, mildly uncomfortable, and suddenly I'm having trouble seeing and walking straight. I can drink as much and I feel okay, but the problem is -- IT IS THE BIGGEST PAIN IN THE BUTT EVER. If I felt okay I couldn't go to museums, because of water restrictions. I need to have handy bathrooms... I really want it scaled down prior to the holidays. My parents are a three hour drive. I can't have my husband pull over that often for me to go, and I can't cart that much water in the car with dogs and luggage. And my parents can't come down, because I am up so much peeing at night, it disturbs their dog and she barks and keeps them up. It's probably the least of my sick feeling health issues, and the one that's the biggest nuisance, because even when I feel like I could go out with my husband to the grocery store for milk (yeah, I have fun dates!) I'm kinda stuck thanks to the speed I dry out. It's like I hate bringing it up cause it's not painful, but it's a pain, and I know all too well doctors like to use existing symptoms and existing meds to blame other problems on anyway, so I kinda need it figured out. Unless it's acknowledged that it's there by the test, I'll be told to just "stop drinking so much" which, if it is either form, could be dangerous.

The kicker is even if it's definitive it won't explain what's doing it... If it's neurogenic I'll need an MRI, and I'm not sure what they'll do if it's a kidney thing. It's just that they're treated very differently. (It's not related to either of the diabetes mellitus varieties... So alas, I am allowed no water as any would mess up the test results. I think I probably could eat, but I'm going to be evil, so I'm not going to bother.) The good part is that it's not really a particularly dangerous condition (as long as I don't dehydrate or if I need to take DDAVP I need to be careful to not drink too much, or risk water intoxication)... But I can swear on a stack of Bibles, phone books, or Superman comics it is the biggest nuisance. I'm having to drink 3 gallons (at least) of water to not feel like total crud daily, and my 24 hour urine was about that in terms of output. The problem is, if I don't drink, I still pee. And pee. And pee. And volumes of it. It just keeps coming. It stinks though cause I feel like I'm sloshing but I'm drying out at the same time. So while it explains not much of anything, and it is sometimes apparently idiopathic, there's not a whole lot to it itself -- it's a pain, and it's usually an indication that something else is going on.

Hi... It's a weird thing... My urine is really diluted (osmolality was like 144 mosm/kg -- think that's the unit) but my plasma/serum osmolality was 290 mosm/kg. So my urine was diluted, but my plasma, while in the normal range, was still more "dehydrated" looking than it would have been if it were all working okay and matching the diluteness of the urine. I can kinda see why the doctor I saw in the interim while transitioning to the new doc (another general practitioner) said that it's kind of a tricky formula to work out what it means... I think what was throwing my younger doctor was that the plasma wasn't off enough to be flagged but the urine was... (Not sure why the 9.5 liters of urine in 24 hours wasn't more of a concern, but hey...)

I was slightly afraid that I was headed thisaway. My doctor (who is a fellow and still getting her flight feathers) has seemed to be, um... stalling. The doctor who first diagnosed me is teaching this year, so no office hours, and he said to go with this young doctor (same clinic) and he'd be on tap if needed. And I was having that uneasy feeling that I'd eventually get the statement I got last week: "There's not a lot more we can do here, you just need to see specialists." Of course, I know that as well, but the problem is I'm sure (and the doctor who diagnosed the autonomic issues) that there are other issues either co-existing or aggravating the autonomic stuff. And when I go to specialists with nothing truly resolved, and a whole host of bizarre cross-system symptoms, it looks crazy and specialists just shut off (and I sorta can't blame them.) So I know that I'm a rough case, and I know that she's young enough she probably went from high school to college to med school and when you're fresh out of school and go really from student to professional and are dealing with people's lives, it's probably sorta a rough thing to step into. I completely understand. But I've been through the maze of hot potato specialists who have no idea what the other stuff is and that can make their own areas harder. I don't mind someone learning the ropes being here... but I don't need to travel that particular road that I've done so often again. I'm not sure she's aware that she's flailing, but I needed to call for reinforcements. So the diagnosing doctor was paged, and we talked. Logically, he pointed out I can't get a good result for a lot of things, but the peeing/drinking cycle had to be normalized. I asked young doctor about diabetes insipidus, was told it wasn't possible, no need for a water deprivation test. She did refer me to an endocrinologist. Diagnosing doctor thought that perhaps my faulty autonomic system gradually kept setting the hydration bar higher. It happened fast, and I'm not sure, but the logic seemed worth trying to try to hold back a small amount daily to see if we could set that bar lower. I asked if I should still see the endocrinologist the next morning. He said yes. Heh. I saw the endocrinologist yesterday morning. I go in, and by the time I saw him, I'd not had a drink for 45 min. He asks what's going on. I didn't mention the drinking/peeing. He did. Ahem. He said (cough), "I am certain you have diabetes insipidus. Your urine tests have a very low osmolality and the plasma (I didn't think I had that done, hmmm) is technically within normal range, but if you were merely drinking a lot it would not be as concentrated as it is. Let me see your tongue." I guess I was showing signs of drying out in the 45 min period I was there. God knows I felt it. We asked (my husband was with me) about what the other doc said, and endocrinologist said for now, just do what I have to to feel as normal as I can. He is giving me a water deprivation test on Monday. He told me to try to drink nothing after midnight Sunday, come in first thing and they'll do what they have to first thing with tests/DDAVP injection, and follow up labs. He said if I can't do it, he'll admit me to the hospital to get er done... But might as well try it at home (he acknowledged just sometimes doesn't work out that way and that's fine.) I guess I feel like, y'know, it's possible that there's some variety of DI going on, and hey, maybe my autonomic system hydration bar setting is playing a part in that as well. Or maybe it is purely one or the other (my feeling is some sort of DI, though. My urine concentration was off, I just found out, a few weeks before I started to feel ALWAYS dehydrated.) I guess I'll see... I mean, this is really such a little part of feeling so cruddy, but it's also really a nuisance. So that's underway, and my diagnosing doctor is going to throw my new doctor some pearls of wisdom to try to help her out. I tried to reiterate to him that my husband and I aren't really mad at her, we empathize, but we also have to minimize the freakin' huge impact this has on our lives and it's in our court to point out she's lost and needs to get help and take a new approach even if she's not quite made that realization herself. I suuure hope I can do this at home, though. I'm pretty sure my husband'll be lugging me into the hospital on Monday morning in a wheel barrow... shoe

Yeah, my husband and I have... Be prepared. While we weren't sure what was going on with me (I have been semi-ill but pretty functional until about six years ago, at age 30) I knew earlier that while kids might not be out of the question, being pregnant was just in terms of peripheral health stuff. I just knew it. And my husband and I figured that if we wanted kids later, y'know, we weren't real particular about it needing our particular genetics, and it'd probably give us all a better start with each other if I wasn't behind the eightball of nine months of pregnancy and subsequent sleep deprivation that comes from an infant. The gyn I saw was an older man (80s... still practicing. Good guy) was surprisingly cooperative when my husband and I told him we'd been thinking about it for those reasons... I was 27, and have no children. This is really unusual, the cooperativeness. Most doctors won't unless you've had multiple kids (my cousin's girlfriend was told they would not do this for her after her first child ten years or so back -- they did when she had her second almost two years ago (surprise!)) They tend to not want to if you're single as well. I know when I was out of the surgery, the nurses (and some doctors subsequently) were REALLY nasty about the fact that some doctor could be so irresponsible as to "do that to me" when I was so young and had no kids. Um, you know, I did have some say in this, and I was sure... Of course, now I'm doing a heck of a lot worse, even, and the same bunch is telling me that it's a good thing I don't have kids. I ended up, ironically, developing endometriosis (NOT related to the tubal... they saw it when they went in, and it only became problematic four or so years later). Since you do get your period w/tubals, I ended up having to go on a low dose of progestin (5 mg) to keep my cycle at bay and prevent the return of the endometriosis anyway, but it's a lower dose than a birth control pill (and I take it every day... so no periods, which I'm just heartbroken over. Not.) I don't have any regrets. Actually, I'm glad I did it. (My mom was wrecked over it... but it turned out to be an even better idea later. I'm actually glad we held off on seriously thinking about adoption, too). It was pretty hurty the first week after the surgery, but recovery was fine, and the scars aren't even visible (it was endoscopic surgery, as was the endo ablation -- the endo ablation hurt less than the tubal, but I hear that's an unusual case). I think the hardest part might be getting docs to take it on if you're young, single and have no kids, as it's generally not reversible (sometimes they can... but success is limited). I would emphasis the health issues especially if they're to the point they'd seriously impact long term child raising with or without a spouse/partner. shoe

I haven't had a work up other than urine osmolality -- the serum sodium and urine sodium were at the same time, but not the osmolality, and no one's done a water deprivation test (which is partly why I am bull that the newer doctor said to try to "do a deprivation test at home" to see how long I can go... That'd be defeating the purpose, from what I can tell...) I tend to just feel a vague yicky, but it's not much of anything, and then I'll be to the point of losing sight or cramping so I can't stand within minutes... If I drink the instant that yick starts, I discovered (this week, actually, because I do really try NOT to drink that much -- it freaks me out on the one hand cause I know it isn't good... Not imminently dangerous, maybe, but sure as heck ain't ideal...) that I actually can do a bit more than I could normally. Not heavy thinking or lifting, but I can at least move around and sit up and be somewhat more engaged longer... The DDVAP (did I get the acronym right? It is what I used -- the nasal spray variety) did keep me from peeing during the night, but I woke up a lot just because I do anyway (sleep studies show I have the tendency to wake up most times I start in slow wave sleep, started years before the peeing/drinking cycle). The doctor tried it because he figured the need to go was waking me up. It did suppress the going (and I was feeling pretty lousy in the morning in terms of hydration, but I was able to not drink all night and then actually stand up in the morning, still). I think it worked, but again, it's one of those things it was just a test run in terms of no one knew what was going down at the time (this was even prior to figuring out the dysautonomia bit). It's something I'll push with her tomorrow... (and thanks so much for clarifying when the electrolytes would be off... the newer GP is saying that since they're not out of whack it's not an issue. Yessss, it IS. It's a royal freakin' pain.) Thanks again! shoe

Thanks all -- I do try to counteract the water, and thus far, my electrolytes have been perfect (my urine is dilute, but sodium -- both urine and serum are fine, as is everything else). I sweat to a degree that's stunning (mostly at night). I would probably think I had wet the bed, but I don't think my pillow would be affected in that case... And even mild exercise/exertion will make it look like I stepped out of the shower in a matter of minutes. The rheumatologist is an AI guy, and he has acknowledged the problem with rheum./AI things is that they just as often don't like to show themselves easily. My aunt has had massive neurological issues for years, and suspected AI stuff but was seronegative -- and finally developed the discoid rash where they found lupus on biopsy -- she remains seronegative -- and her neuro issues are definitely worse than a lot of the clearly lupus related stuff... So given a lot of things, I can imagine that it's an elusive bit to figure out. I see the GP tomorrow (I feel bad for her, in a way, because I'm a messy case, and I get that, but I'm getting sick of the fact I tell her I'm drinking too much water because I need to in order to feel somewhat human, and she says, "Well, try to drink less!" Wow, that's GENIUS, I can see why you paid all that money to go to med school. Sheesh.) I'm not sure at all how the rheum.'ll turn out. I mean, the bumps are very obviously there and very obviously the same place both hands and all. I'm fully prepared it's possible he'll say it's osteoarthritis, or I have a spontaneous sprouting of petite green peas in my joints and on my bones because I'm half Jolly Green Giant, but I have a decent suspicion he'd only say that after taking a good look through imaging studies and whatever and not say that an imaging study isn't necessary because we can feel the lack of cartilage and bony growths... Um... Ho ho ho! shoe

I've taken a look at that previously -- definitely one of my concerns (esp. where the GP and attending said, just try to cut back to "reset" things... um. No, I'd prefer not to pass out... Of course, the response was... Well, if you're going to pass out, drink. But if I pass out while trying to get to a faucet/fridge/dog water bowl/toilet, that's not so good -- and it's sudden enough it's possible). I have taken the antidiuretic that is rx'd for that (only at night). I stopped because I wake up constantly anyway (they suspected the peeing was making me wake up a lot more than I should... but it's just me). The odd thing is my electrolytes aren't at all out of whack (although my urine osmolality is really dilute.) I've never been clear with DI whether or not electrolytes are off... or if it even matters. I think my biggest miff is that it was a really offhand sort of handling -- and whether it's due to DI or the dysautonomia, something's going on that's not really being moved to be addressed -- and both are actually to some degree, y'know, manageable. It's tough cause I really don't expect a miracle, but I've tried really hard to do everything I can to minimize the effects on my life, and I kinda feel like the medical profession isn't trying to even meet me part way.

Yes, I hear you! And I can also relate to Earth Mother's state -- my husband has finally given up trying to take one day off and schedule 2 or 3 appointments in it... I can only make one. (It's so lame to call a doctor's office and say you're too sick to make it... But I had to on a few occasions till we learned that lesson). I've also found I can't take cabs on many days because overtired = giving cab drivers bad directions. I called to have a cab pick me up at a doctor's visit, and after 50 minutes had to call back sheepishly and say, "Did I give you the right address?" They knew I hadn't at that point... The cab driver discovered the street number I gave him didn't exist. It's hard, and it's weird cause doctors don't always get it. I had to cancel two GP appts. in a row because she wanted to take time with me and scheduled me last in the day... 7:20 at night. I was asleep by then -- it's always a toss up with me at night. Then she said I looked better at the last appointment, and I'm just thinking -- why? Because I actually managed to show up? It's hard to plan anything. My mom asked if I would make it to some family gathering in three weeks... And it's like, I have no clue. You're literally going to need to ask me five minutes before we ought to go...

Hi all, I wasn't here a whole bunch before I got, um, in a major fight with the gravitational pull of feeling ick. I am having an okay moment, and stopped by... And I just spotted a post by my husband (unless there's some other guy with "shoe" in his name who owns snakes and has a wife with autonomic problems. My husband is awesome, by the way, and I'm not saying that cause he's reading here, I'm saying it cause he's posting here.) Anyway... While my new GP (who is in-training -- I think she's in the "fellowship" stage, as she often has attendings step in) stands in for the really awesome guy who diagnosed the whole deal is away teaching I'm just getting increasingly concerned. She's a nice woman (I just wrote "girl" -- I have hit the age every new doctor looks like a junior high student) but I'm getting really uneasy that she's not quite getting it. The problem is always that I don't have the energy to really make her get it, y'know? I've found since things really hit the ground in January 09 that I need to drink loads of water (which she is aware is pretty common in dysautonomias). The problem is things are now so slow to be addressed that in order to feel decent, I'm seriously drinking upwards of 3 or more gallons of water a day (Gatorade works better/lasts longer, but of course you can't drink even half that amount of Gatorade a day without causing problems you don't really want, either). I don't feel thirsty, I just feel fewer effects when it comes to blood pressure and heart rate problems and headaches or, um, temporary blindness, cramping and passing out -- if I waited till I felt thirsty to drink, I'd be unconscious. I have of course tried to figure out (on my own) if this was something that was a coincidental thing -- like, if I drank and felt better a few times, is there a real relationship, or am I finding patterns that aren't there... And there's an honest to pete relationship. And sometimes I feel good enough I could maybe go out for an hour or two, but it's limiting as carrying water and finding bathrooms that aren't completely cringeworthy and readily accessible aren't always possible. But if I try to hold off, I feel really awful within an hour and a half and can't do anything anyway. She guessed that I was getting migraines a few hours after exercise because both the exercise and the water intake were raising my blood pressure too much. I figured that might make sense. So I tried to, as she said, cut back a little. Um. Five minutes into very easy walking (and little sweating) I had lost sight in one eye and I knew the migraine would be coming down soon. So I guzzled a Gatorade. Bye, migraine. And I noticed that if I drink even before I get my "uncomfortable" markers, I actually feel somewhat... well... I don't feel deathly horrible as much. But I don't think she's really believing that I really have sat and tried to figure out if it was helping or placebo, and that I'm needing to drink that much because we probably have some things we need to get off of our posteriors and try to treat and not talk about in theoretical terms. (Grr.) The other deal -- and I'm more upset with the attending that was on that day -- is that I apparently have some sort of arthritis in my knuckles (the ones attaching my fingers to my hand) and my wrists -- as evidenced by (typing being painful) and the large bony outcroppings symmetrically located on both hands. Attending said that my cartilage had gone AWOL, take some Tylenol. My concern is that when this got worse in Jan., I had really swollen joints in both hands -- we suspected rheumatoid arthritis, but tests were negative (which rheumatologist said was an indicator it wasn't that sorta deal, but the problem with rheumatological things would be you never can say that till it turns out to be something else). From my understanding, osteoarthritis doesn't usually affect those particular areas in that fashion, especially in someone under 40-50 (all round it's usually weight bearing joints, and I could never walk on my hands). I was not okay taking that pronouncement on faith (again, mostly was p.o.'d at attending) especially where something like RA can make an autonomic dysfunction worse (I know that I've had the dysautonomia for years -- probably since childhood)... and especially since stuff like RA is treated very differently than just taking tylenol and has potentially deadly complicating factors all on its own, never mind the pre-existing stuff. And hey, if it was something like that, maybe treating that could make the autonomic issues roll back to where they were a few years ago and a bit easier to manage (and more importantly, live with). I made an appointment with the rheumatologist I saw before (who had acknowledged something was swollen, and definitely amiss, but it didn't seem like his territory for certain) and I see him the beginning of September. I let my GP (and the GP who diagnosed me as well, as he wants to be kept in the loop and has assured me he is not out of reach ever -- love him) know that I was going to do this (and requested the referral). It might be absolutely nothing and have no bearing on how everything plays out -- but y'know, I'm not willing to just assume that right now. Meanwhile I hang in there... I think the hardest thing is just the feeling that nothing is getting done. I know there might only be limited success and there will be pretty okay days and really horrendously horrible ones, but I hate more than anything the feeling that because the rewards and gains might seem limited or small to the doctor (hey, I know they become doctors -- most of them -- because they like to help people, not just annoy them to death ), they have this hesitance to try anything. But we won't know what the effects of any thing are until we try it -- and it's my life and health, and I ought to have some say in whether the outcome is potentially worth it. Or maybe I don't like it seeming like they're being lazy, when I kinda don't have the luxury of being able to do anything at all -- never mind stuff that would count as laziness.) Anyway, an update... and wondering if anyone that had a pre-existing dysautonomia of any sort later found that they have a co-morbid autoimmune sort of disorder going on? thanks shoe

I have been absent, and it's not for lack of trying to check in. It's been a wicked couple weeks. I ended up SMSing my doc who diagnosed -- who doesn't have office hours this next year as he's teaching -- to ask when (and if) I should worry and if any of the labs I had done had been off. First of all, this man might as well walk on water in my husband and my eyes... Within minutes of my text, he texted back, said he was teaching at the moment, would check and call. He did. Of course, I was mentally dead by the time he did, but he talked to my husband. Seemed every last test was okay (TSH, T3/T4 of all varieties) but that oddly enough, my urine sample was really diluted. Seeing as one of the things I texted him about was the fact I was feeling horribly dehydrated and in order to feel some kind of relief was sucking back Gatorade (which was preferable to water -- longer lasting effect on relief) that was kinda interesting. He said he'd try to squeeze in a visit in the clinic to talk about where from here. He couldn't... but he stopped by the house, stayed nearly three hours. Got the whole picture. The bad part is I'm a mess, and have been for a very long time. So I have to stop every last medicine I'm on and we need to start getting baseline tests so we know exactly what's what. I am not happy, but I also know that this is inevitable. And now I just want to get it done quickly so I can get to the "maybe I feel better today" part. I get follow up lab results tomorrow. The urinalysis was re-done to make sure it wasn't a fluke, along with sodium levels and other stuff that's been tested three or four thousand times. I guess tomorrow we also start to wean off stuff (Ritalin, Concerta and propranolol, mostly. ) and schedule tests as we can. I don't want to be like this long. I don't want to be like this now. I wanted to pop in. I don't think I'll be doing so often, as I really am barely able to do anything. Which is just cruddy.

I am also from the area... The kind soul who just diagnosed me is a PCP, but he's now taking a year to do the attending/teaching thing, so I will be seeing his underlings (one he picked out specifically, and he will be in touch). I know the plan is to send me to various specialists as we discover what the dysautonomia is really messing with -- but like many, my track records with neurologists has been less than wonderful, and while this all originates in the brain and I have just as many straight up "traditionally" neurological manifestations of this as cardiovascular/blood flow stuff, I am not sure that I (or the diagnosing PCP) at this point feel real comfortable with the idea of a neuro taking it all on. I haven't seen that particular doc at BI, but I've seen one neuro there and a few at B&W... Let's just say B&W made me suspect that many neuros are very much enthralled by the sound of their own awesome, and my experience at BI did very little to change that opinion, when it was all said and done. The one neuro I've seen who you'd never suspect was a neurologist (he has social skills!) is my sleep doctor. I've found that sleep doctors do pretty well dealing with nebulous/sort of undefined symptom sets and know what to ask and consider and take answers seriously. Unfortunately, he only deals with sleep, and that's only part of my issue. Grrrr. My PCP said that he really likes Ed Fischer as a neurologist... I have no clue if he's experienced with dysautonomias, but he said he is someone who really likes to deal with some quirky neurological issues and teach others about them. (I get this image of the cafeteria staff at the hospital all ducking and running when he comes in because they don't want a lesson in brain anatomy while they're plopping lumpy mashed potatoes on his plate...) Again, I've not personally seen him, but at this point, that particular PCP walks on water for me and he might be worth a check out, just to see?

Hey, Isn't it nice to know you aren't imagining things? Things got markedly worse for me in the last six years (though I had many years before that of what probably was some kind of... I don't know) and even though I knew it wasn't something that was consciously (or even subconsciously) psychosomatic, there are so many times when tests are negative or inconclusive or written off as flukes (I have so many tests that are flukes that you'd have to wonder if the labs suck or if maybe they, y'know, aren't flukes?) and it all seems so whacked I started to wonder... Of course, the pinnacle of that for me was having an in-home physical therapy eval, and the (very very nice) PT asks me to get up from the toilet without using my hands to assist -- and I find I couldn't. I just couldn't. My brain is telling my butt to get up, and I get to a point, and my legs can't get me up any further. I hadn't realized, and I was like... I couldn't wrap my head around it. I couldn't wrap my head around why I couldn't get up, why my brain wasn't getting the message and my legs couldn't follow through, and why it wasn't showing up on tests... I was so mad, and I kept trying. The PT lady was so sweet, and she was like, "It's okay, I know you are trying. You just can't do it. If you push yourself any more, you're just going to hurt something else and get even more mad." But there's no apparent answer and you sure feel crazy (and then doctors have the nerve to see it happen and say, "You really aren't able to get up?" Finding a doctor who believes what you are going through is a great thing -- I had one for many years, but she was stumped, and passed me on to someone who managed to put the pieces in place. Now we're trying to find what's being disrupted and how it's affecting the other disrupted bits. I know my heart rate/bp is a big player, but I have the other stuff that might be directly related to blood flow problems or only peripherally and complicated by other autonomic disruptions. I can relate to the doctor anxiety. I loved my former GP, but inevitably I'd get sent to specialists who... well, as I said to her... I got to a point I couldn't do much at all, but at least I had stuff I could do, and I learned to live within those limits. It was because if I pursued feeling better, all my good hours would be spent going to doctor visits, and I'd have no ability to do anything I liked or needed to do outside of that. And it felt like going was just a waste, because there was no return on that time investment. I'd go, and I'd come home with no answers or help, and I'd still have stuff I needed or wanted to do that I then couldn't. Or worse, I'd go, get told that I was faking it or that I was making a big deal out of nothing, come home, feel worse about me physically and mentally, and still have stuff I needed or wanted to do that couldn't. If the outcome was no help, I decided that until things got waaay worse, I wasn't going to bother going to the doctor. I might as well do stuff I want if I'm just gonna feel yech either way. And I don't pay for insurance and co-pays to take abuse. But it's so hard to say that when you are in an office, in a paper gown, feeling crappy and tired and just wanting to feel better, and you get hit with the "this happens to everyone. Have you seen a psychiatrist?" And I had, repeatedly, and (god love him) he said, "What is it with the rest of the medical profession? Do they hate doing their jobs that much? I could prescribe you something, but it wouldn't work, because this isn't a psychiatric issue... and I don't want to complicate this any more for you in the long run." There are good ones out there. It just takes a whole lot of wading through to find them. As my present guy said, "You might be crazy, but it isn't causing the problems I'm seeing now. If you are crazy, it probably has a lot to do with what you have been through courtesy of feeling ill and being tossed around thus far." It's hard to hear the words "Keep plugging, you'll find someone who can help" when you haven't yet... but it is true. Hang in there, it'll happen. shoe

Nina, You, your dad, and your family are all in my thoughts. It's hard enough when you feel well to watch someone you love go through this sort of thing, and it's a quadruple drain when you have a health issue yourself. My dad recently had a heart attack and quadruple bypass -- and it was tough because I knew he understood I couldn't be there with him as much as I'd wanted to be, but it was hard for me to deal with not being there for him. Probably doesn't need saying -- but definitely take some time to take care of yourself while watching over dad's care. It helps everyone in the long run. Thinking of you both. shoe

Oh, my... I haven't had something like that go on personally, I feel for you. I've had UTIs and kidney infections in the past -- no stones, but the UTIs were painful enough on their own (and my cousin had a few stones where he passed out when peeing). Not sure about the itching, but I'd wonder if the combination of a urinary tract infection/stone and the inflammation and havoc they wreak combined with the "usual" (ironic word to use here) dysautonomia stuff might make what would seem unrelated/unusual combinations of symptoms pop up. Thinking back, I once had a kidney infection -- I didn't have much pain (so I didn't recognize it as such) but when I got to the doctor and he started the exam his face lost all color, he pulled some blood and got a urine sample, and said depending I was either going home with heavy duty antibiotics or I'd be headed to the hospital and worked up to possibly be put on the liver transplant list (fortunately it was antibiotics, and fortunately, I felt way too sick to really get alarmed by the liver failure possibility). So I guess these things can have weird referred seemingly unrelated presentations? I hope that whatever it is calms down, gets figured out, and stays well away from here on out. Wishing you well.

Hi all -- I'm replying to me to reply to all of you. That's how I roll. There's not a real specific reason for the lumbar puncture (which sounds funny, it's not like, "I took a side trip to see the world's largest ball of twine as we drove through.") I think he's now stuck me into the "monitor everything to track any changes over time" and that's one of the areas I think he suspects might have changes. For sure my biggest fear with that (aside from the "eewww" concept of it all) is the headaches that come after sometimes. The bad news is, he teaches, so I lose him for a year, but he handpicked his successor and said he is in no way invisible to me or her (he gave me his cell, and told me to please go easy on him. Hee. I hate the telephone, and I won't put him on speed dial so there's no chance the dogs can step on the phone and call him). Walking out of there, my husband turned to me and said, "Is it wrong I want to kiss that man?" Heh! I think my last GP both believed me and took me seriously (I know she did) but she was less the "forensics" type of doctor and more the "I have a strep throat" sort -- which is fine, and I love her to bits for realizing that and getting me to this guy. And it was really hard to hear him say that this probably isn't going to get any better at its core, and managing might never be a wonderful success, but it wasn't as bittersweet as I thought it would be. Again, when he asked why I wasn't so riled up, that's when I started break a bit... I knew this was coming, and probably the only thing that was worse than I was expecting was that I was hoping that it was something that management was either a bit easier or a little more of a known quantity. But it's a lot better, god help me, to hear "You have a serious problem and now we need to work through the best ways to fix it" than "You're fine. Suck it up and go home and deal with it. Nobody feels great all the time." (Arrrgh! If I had a dollar --- or at least didn't have to fork over a co-pay, for every time I heard that I'd be rich.) But he is my hero right now. I mean, he went through, slowly, carefully ALL my records over the past month. (He's nearly finished). I brought him some, the surrounding hospitals sent him the rest.... But what I brought him was seriously in one of those accordion file archival envelopes and was about seven inches thick. I think the worst part is there must have been loads of stuff in there that just didn't really apply. He apologized two weeks ago. I mean -- I think the world of this man. I went in just to have a TB test read (again, he didn't think it was TB, of course, but I was there, it was easy, and we'd all feel dumb if it was missed). So my husband and I go in, nurse looks, test negative, and as I'm hobbling out with my cane in one hand and husband on the other side... He walks into the lobby of the building. He's like, "Hey, how are you!" And then he sits me down for an hour in the lobby (no appointment, HIPPA laws be dammmmed!) and just talks. It was so hard to sit that long, and I'm sure he was noting that. But he apologized and said that he'd one day love to present my case at some of the teaching conferences. Not in regards to my health problem itself, but because he said my case had to be one of the ugliest ones in terms of falling through the cracks, doctors seeing a problem but tossing it out once the most likely test didn't corroborate, and basically not being considered as a patient or even a human, but more a collection of complaints and lab reports -- and that's a major failing of how medical professionals are being trained. Again. so hard to hear, but at least I felt like for all that time I was saying "I am getting kicked around..." I wasn't being overly sensitive. I was being kicked hard. In other news... curiosity got the better of me. I tapped my face (right side does it) last night. I'm not sure if it's necessarily hours of uproarious entertainment (or required calling everyone in from the waiting area to see, hee hee) but the twitch is really odd. It's one little muscle independent of the rest of my lip. So that looks weird, and all I can think is... This little cause/effect thing was recognized and named by some doctor. Wow. There was a guy with a whole lot of time on his hands.

Last month, after many years of searching and being told that I a)was overweight b)anxious c)depressed d)faking it e)drinking too much caffeine f)not drinking enough caffeine (...you get the idea...) I got sent to a new GP by my former (but waaay cool, and I am grateful for her) GP. New GP rocks, and last week states that he's pretty sure it was some sort of dysautonomia. This week he's nearly allll the way through my records, and he's sure it's a dysautonomia, and in light of what was there, tests in the past and what he sees now, he's also reasonably sure it's not an identified or particularly categorifiable type. Main reasons center on some really quirktastic neurological issues (he and my husband spent five minutes tapping my jaw and watching, I guess, one little spot on my lip twitch. Dorks.) He still wants some more fun tests (and it doesn't look like I'm getting out of this without a lumbar puncture. The one test that scares the crud out of me -- that's it.... Ack.) We're going to nail out where the biggest problems are, tackle treating them first, and go on. Funny though. He tells me, and with the appropriate gravity (no pun intended). And I'm exhausted, not thinking, and not terribly surprised. He asked how I was actually kinda not feeling so horrible about it... and all I can think is... Man, I knew it wasn't going to end well. I am actually just really really really relieved that someone connected the dots finally and I can get whatever I can get of this behind me now. Of course... I tried to say it and got all blubbery. Now my husband wants to keep tapping my jaw. Dork. It's hard, it's so not good news, but I know I can at least feel better to some degree than I do now, even if it isn't going to be predictable. And this is what I have to hold on to. But I thought I'd give the update... (I have another TTT -- I guess I had some testing previously standup/sit down/lay down, blood pressure, which indicated there's orthostatic bp fluctuations in keeping with dysautonomias).

Yeah, I have this happen. Usually when I'm in a bad patch (like, um, lately). I'm not sure if the rapid, hard heartbeats are waking me, or if it is from my rolling over or moving an arm in bed or whatever... but yes. Seeing as most of my 24 hour Holter time was spent lying down, and my average rate was 95 bpm for the period... I am guessing that it happens a lot and doesn't wake me up too. It is really disconcerting, that's for sure. I haven't been diagnosed with POTS (as of yet) but they are certain there is some form of dysautonomia going on. I will always feel slightly more comfortable reclining (at an angle), but I never feel great. A lot of why I wake up early in the morning has to do with that heart thing... by the time 5-5:30 rolls around, my heart is thudding every time a move a finger, and I've soaked the sheets with sweat so that my husband's side of the bed is soggy too, and I figure my really overly inadequate meds at least help with this a teeeeeeny bit, so I might as well get up and take them (so I can come lie down again in a half hour, but at least I can be more comfortable doing so, and hey, that's something). So I don't know if it's just POTS, per se, but I've had every other avenue and system that could do such things poked and photographed and stuff, and they've all been in the clear. It's (without saying) probably worth mentioning to your doc (or even just calling the office and leaving a question with a nurse or nurse practitioner, if you feel they're on the ball). But definitely know what you mean... and have it happen regularly.