ophelialit

Ash, I'm sooooo sorry to hear you ran into one of the worst kinds of docs out there: The I-Don't-Know-Everything-And-Refuse-To-Believe-Someone-Might-Know-More Than-I-So-I-Act-Like-A-Jerk-To-Compensate MD's. I've encountered more than a few of them in my days as well--I've had ER docs tell me everything from "You need a psych eval" to "You probably have AIDS." The issues we deal with are complex and unique and frustrating and heartbreaking, and being dismissed by the very people we turn to for help can be utterly devestating. Please hang in there--there are good docs (even ER docs) out there, and I know people who carry letters from their cardiologists or GP's instructing the ER to administer saline upon admission. You might want to see if you can get such a document...hope you feel better soon.

Hey there! It's relatively treatable--4 drops of PredForte (steroids) 4 times a day for a week and try to stay in the dark as much as possible to allow the pupils to dilate (actually not sure why that's helpful, now that I think about it). Anyway, it's related to inflammatory and autoimmune stuff, so I'm sure it was triggered by something in my wacky system. I have Hashimoto's Thyroiditis, though I'm not on meds currently because my TSH, T3 and T4 levels have all been normal....and it seems as if there's a pretty big correlation between Hashimoto's and uveitis. Who knows? The HLA-B27 is an autoimmune test for ankylosing spondilitis, primarily, and it's also heavily tied to uveitis, soooooooo, I guess we'll see. Sheesh. Ugh. Blargh. And so forth...

Hi again, The MCAD can cause high levels of inflammation in the bladder (and everywhere else for that matter), and interstitial cystitis is the resulting condition; I've had a billion urine cultures over the years, and there's never a positive UTI (though I had them quite frequently in college), but the docs always order the cultures because of the trace RBC found in the urine samples. Better to be safe than sorry, I reckon. Anyway, you'd want to locate an immunologist for any suspected MCAD issues....good luck!

Hi again, all... So I posted last night about my hazy, foggy vision that was becoming seriously bothersome...well, I woke up this morning and thought, for a moment, that the house was on fire because all I could see was "smoke." Once I realized it was just the foggy vision to the MAX, I called my ophthalmologist and scheduled an appt. ASAP. As you know, I was seriously freaked out and concerned that it was optic neuritis which is a big indicator for MS. Turns out I got good news and bad news: good news is I don't have optic neuritis. Bad news? I have bilateral uveitis! ***? Now my eye guy is sending me for an HLA-B27 test to check for yet MORE autoimmune stuff, and I have to spend the next week in a dark room and use steroid drops 4 x's a day.....anyone else out there ever have this? I am SO frustrated with the whole universe right now....I think I'll spend that week in a dark room curled up with a good book and a big ol' bottle of Grey Goose!

Hi, guys... I've had this for years, too, and it turns out that it was related to interstitial cystitis, which is related to MCAS....all of which is related to my general crankiness!

You know what? Maybe I lied a bit! It just ocurred to me that I've been taking quite a few Imodium lately to deal with the aforementioned unpleasant IBS issues...and this symptom (now that I think about it) started around the same time...I don't really consider Imodium a "drug," but it actually is! I wonder if loperamide comes with this kind of wacky side effect? I'm going to look into it! Here I go!

Thanks for the input--Ben & Jerry's all around (I prefer Phish Food or Cherry Garcia, but I'm not that picky!)! And, oddly, I'm on no meds of any kind....like so many of us, I don't tolerate chemicals well, and though I've been prescribed a ton of meds in the past, I've never found anything that worked well enough to justify the side effects. Sooooo, nope, it's not that...I know I probably need to do the MRI, but I'm trying to rationalize that it would be statistically unlilely to have POTS, MVP, MCAS with a side of MS, right? Right? I don't know...I was an English major, so stats weren't ever my thing....

It might indicate the presence of an infection (either bacterial or viral), but not provide specific information on the origin. It may also uncover iron levels and associated anemia. All of those other conditions require more sophisticated/specific tests... a basic Chem Panel (sometimes called a Chem 7 or Chem 8) will pinpoint metabolic issues like kidney or liver issues, so you might have one of those tests thrown in as well...just for fun?

Achilles, A CBC or Complete Blood Count is just that--a test designed to measure the quantity of various factors in your blood--primarily Red Blodo Cells and White Blood Cells. Occassionally, each will be broken down into more specific componets and qualities, but, primarily, it's designed to find the presence of such things as anemia, infections, etc. Hope this helps.

Tell me about it, Katybug! I've not been able to exercise properly since November due to this IBS issue-thingy, so I've been sitting around the house amusing myself by eating Twizzler Nibs and mint Oreos...not to mention Thanksgiving and Christmas dinners...sheesh! I keep telling myself that I'm going to start up my new exercise program the minute my surgeon releases me....soooooo, maybe 4 more weeks? I'm trying to be bikini ready by summer, but I'll be lucky if I'm trenchcoat ready by September!

Canadiangirl, Thanks SO MUCH for the response--it's funny that you made the make-up removal cream comment because as I was attempting to explain this to my husband, I said that it looks like I've got suntan lotion in my eye. Which, of course, prompted him to ask if it burned like suntan lotion....and I said "No, it just LOOKS like it...smeary." As you probably know, it's really hard to explain wonky symptoms to folks who have the audacity to be perfectly healthy all the time! And I checked out my pupils....they seem to be equal and reactive, but, then again, what do I know? I've got smeary vision! I've also been having some wicked TMJ/facial/head/ear pain on that side of my head the past several weeks, so perhaps that's a factor, too...I just can't understand why the vision would get worse with hot water/exertion, but I'm seriously heat intolerant, sooooooooo....who knows..... Hope you recover quickly from the flu....the whole world is a creepy germ-fest right now!

Hi, all... I'm having one of those fed-up-stabby-faced-super-cranly-out-of-patience kind of days....er....weeks....uhhhh....months? On top of a host of other things going on health-wise (minor surgery to correct some issues caused by IBS, stress out the wazoo, etc.), I've developed a charming new visual symptom that I hope someone else has expereienced or at least has heard of....basically, the vision in my right eye is....foggy...I actually tried to clean off my glasses a few times because everything looked so smeared. It's especially bad when looking at windows (the dark/light contrast seems tricky), but it's not painful. It's better when I'm outside and worse after a hot shower...which is Uthoff's Sign, apparently...which brings me to my next fear....I'm TERRIFIED that this is Optic Neuritis and a harbinger of MS. I've had an MRI, but many, many years ago, and I do have weird things from time to time like the rest of us (ghosting vision being a big one), but I've never had this fogginess that has persisted on-off for 2+ weeks now....I suppose I need to schedule an appt. with my ophthalmologist, and I know he's going to reccomend an MRI, and then I'll be off with a neurologist, and I swear I just can't handle it right now! I spent ALL last summer chasing the MCAS diagnosis and thought I finally had a handle on everything....and now this? Too much! I surrender! I'm crawling in a hole with my friends Ben and Jerry. Sighhhhhhhh....anyone out there feelin' my pain, yo?

Hey abbyw, I've considered that, but I'm really not sure who'd I'd contact for an event of this magnitude, and I really don't want to be a pain in the bum with my "special needs." I'm half considering just telling my husband to go on without me and take lots of pics...I'm just not sure I'm up for all this entails...

Wellllll, here I am with what might be the dumbest "problem" ever...a close friend who works in the political arena has managed to snag a handful of tickets to one of the official Inaugural Balls tomorrow night, and, generously, she's invited me and my husband to attend with her and her fiancee. My first reaction? THRILLED! Glitz, glamour, a fabulous gown, celebrities galore, a chance to honor my main man Obama...so, naturally, we accepted with great thanks. Now here I am the day before the event...and I'm beside myself with anxiety...so much so that I'm just about to barf from the sheer panic (nothing says glitz and glamour like barf!). When we accepted, I hadn't considered the logistics of the whole thing--driving into the city (I'll have to drive by myself as my husband is a ranger with the Nat'l Park Service and has to report for duty at 5am). Navigating around the road closures, traffic and 800,000 of my closest friends will NOT be fun. Standing in line for the security check is a recipe for a POTS disaster, and then, to top it off, being surrounded by thousands of people in a huge convention center with nothing but noise and bright lights! I might as well just pass out now and be done with it! I know this is a once-in-a-lifetime/bucket list opportunity (EVERYONE has told me multiple times, thanks), but all I can think is EEEEEEEEK! And I'm more than a little angry at this disorder that ONCE AGAIN is doing its level best to poo on my parade (this is beyond merely peeing on my parade)...what to do, what to do? Sighhhhh...

"Hero" by the Foo Fighters....actually anything by the Foo Fighters is great. They're an amazing band, and Dave Grohl is my boyfriend....OK, not really....not YET, anyway...

Ginger---"I'm so sorry" feels inadequate, but I am truly saddened to hear that you're experiencing this. I've been married to a jerk and divorced from a jerk, and believe me when I tell you I understand. I truly believe the silver lining in our enormous, sucky, dark clouds is the strength we develop from dealing with endless amounts of nonsense...we're warriors and survive that which would render mere mortals useless. Hang in there...you're stronger than you know.

Katybug! Eek! And wow...so sorry you have that particular file in your memory bank! I'd wager that we all have 2 or 7 stories we'd rather forget. I once vomited in my future mother-in-law's lap (very reminiscent of former President George Bush's political faux pas when he yarphed on the Prime Minister of Japan) following a terrible bout of altitude sickness...I secretly think these experiences lead us to planes of greater clarity and, in turn, we become superior humans....yes? Ha! :-)

Ahhhhhh, you guys are the best...truly! You're like my BFFFFA (Best Friends Forever From Far Away---just made that up, I did). @Giraffe: I thank you for sharing your tale of the Rogue Poo! Bonding through horror! Yes!

Dry as the Sahara over here....my hands look like reptile appendages most of the time, and NO amount of lotion seems to help. I have, however, fallen in love with Badger Balm....it's a kind of greasy, waxy hand treatment I found in a hardware store (I kid you not--I'm sure it's for lumberjacks or something). If I could buy it in bulk and soak in it, I would. :-)

To add insult to injury, the bum-pain has apparently affected my typing as well--I just went back and re-read my post...typo much? Sheesh! I always forget this forum doesn't have automatic-underline-spell-warning, so I just bang away with merriment and fail to proofread....which is kind of funny considering one of my side gigs is as an editor/proof-reader for Pearson-Prentice Hall! Sighhhhhh....anywho, I clearly meant PANICKY rather than PACICKY which, I'm nearly certain, is not a word.

Hi, all... I'm having one of those I'm-Sick-And-Tired-Of-Being-Sick-And-Tired moments...err.....weeks....ummm...months? Anywho, I'm fairly used to the daily parade of dizzy/sickly/heart-pounding/fatigue symptoms, but something happened this week that just about pushed me over the proverbial edge. Sooooo, like so many of us here, I suffer from IBS (predominantly diarrhea, lucky me), and I had a particularly challenging bout recently following work stress, family stress, life stress, etc. On Tuesday of this week, I developed a pain...in my bum. (There's just no polite way to say it.) I assumed it was just irritation from the regualr trips to the bathroom, but it got worse and worse and worse...and, well, you get the idea. By Thursday morning, I was sitting askew in my desk chair and walking like Frankenstein. I couldn't imagine what was going on, and, as you might imagine, it's rather hard to get a good view of one's own bum without some serious contortionsist skills. I contacted a local Colo-Rectal surgery office (being in the DC area, I am fortunate to be surrounded by specialists of all persuasions) that had a website that PROMISED "professional and compassionate care for life's most sensitive issues." That made me snicker, but it also made me feel like they probably wouldn't guffaw at my concerns. OK....soooooo, fast forward, I ended up meeting with a lovely doctor (she was so pretty and sweet that I was tempted to ask her if she might no want to consider another specialty, but, I digress.) Long story short--after being examined (a bum-examining table thingy is quite the acheivement of modern construction, by the way), it turned out that I had....an anal abscess! What??? Pardon ME? Alas, it was true. Apparently, this is something that can be caused by inflammation (oh, my old friend) especially when the patient has IBS or frequent diarrhea or a gypsy curse (apparently, I have all 3). Boo-hoo-hoo, and then I had the abscess drained. In my discomfort and horror, I forgot to mention all of my dysautonomia stuff, so when she shot my bum full of Lidocaine, I became dizzy and borderline pacicky. Boo-hoo-hoo some more, and I am just COMPLETELY fed up with my existence at this point. I mean, REALLY? I feel like I'm just a walking time bomb waiting for the next ridiculous thing to befall me. Plus, it's going to take 3-4 WEEKS for this to fully heal. And you know what else? I'm pretty sure there's nothing sexier than an anal abscess, soooooo my husband and I have been living lilke very polite roommates for the past week....blargh. Sorry for the enormous rant; I think I just needed to vent...enough is WAY past enough!

Welcome, Gerrik1! It certainly sounds like you've been through the wringer with POTS; you'll find a lot of support and encouragement here as we've all been around the same block a time or two!

Hi Tigerbomb--and welcome! I'm sorry your suitcase of symptoms brought you here, but I'm glad you found the forum--you'll find nothing but smart, concerned, kindred spirits! To attempt to address your questons, I'll begin by telling you what I imagine you've already discovered--there is no one "correct" answer, no one "right" path and no end to the frustration from time to time..it's a super good time! People with dysautonomia typically end up seeking out the physician they need to address the way the disease manifests itself at any given time; for instance, if you present with GI issues, you end up with a GI consult; if you have chest pains and tachycardia, you end up at the cardiologist's office; if you have headaches and dizziness, here comes the neurologist--you get the picture. Although I had ALL of those issues (and many more), it was a cardiologist who finally diagnosed the dysautonomia in conjunction with my MVP, and that was quite a long time ago. It's only been very recently that I've become aware of MCAS and was able to put the last piece of my personal puzzle together--AT LAST! Mostly, I just wandered around feeling mildly to moderately crappy all the time until I found a remarkable immunologist who nailed down the MCAS diagnosis--I was all YAY and WHOOT!! I finally had an answer to my decades of questions...never mind that only a handful of folks in the world really understand it, and the treatment is kind of hit-or-miss! As far as other tihngs that they may test for first, there can be quite a slew of them; personally, I was tested for Multiple Sclerosis, ALS, diabetes, leukemia, lupus (about 400 times) , rheumatoid arthritis, and--my personal favorite--giant brain tumors! They typically like to rule out the scary-but-understood things first before moving into the mysterious-and-vaguely-untreatable neighborhood. So, I hope this lengthy response helps at least a bit...don't hesitate to speak up if you have other questions...I may not have the answer, but, undoubtedly, someone on here will...at the very least, someone will have been through it before, and THAT is sometimes the biggest comfort of all! Take care!

I don't think it's necessarily a long shot; a lot of us have TMJ, and it can cause a wide range of dental symptoms including "phantom" tooth and gum pain. In fact, I once had a wisdom tooth removed becasue the dentist and I were convinced that it was causing my severe jaw and mouth pain. Guess what? 12 years later, the pain is still there more often than not; I've since learned a lot more about TMJ, and it's a sneaky condition that can masquerade as many things as it can affect vision and hearing as well. All part of our wacky circus of symptoms!

Katybug, I KNEW I shouldn't have stopped using heroin!! Ha! I'm kidding, I'm kidding...even the vague concept of using recreational drugs is so utterly foreign to me! When we have random drug screenings at work, I always kind of laugh and say "I can't handle a child's dose of cough medicine let alone the "hard stuff"..." Sighhhhhh....it is indeed disturbing to know that our systems behave as if they've been wounded or altered in some way....