Sunfish

i'll try to make it back to chime in re: discussion, but for now here are some links that may prove helpful:

here are a variety of "gastroparesis diets" from various sources to perhaps give you some ideas:

http://www.healthsystem.virginia.edu/inter...sisDietTips.pdf

http://www.healthsystem.virginia.edu/inter...ARESIS-DIET.pdf

http://www.acg.gi.org/patients/gihealth/pd...stroparesis.pdf

http://www.gicare.co...ted/edtgs08.htm

http://www.g-pact.org/diet.htm

they vary greatly in terms of detail & i apologize if any are now "dead" (as i copied & pasted from an old post). i'll check them & remove/ change any bad ones over the weekend but after being up all night last night w/ my cat prior to him needing emergent surgery today i am simply WAY too wiped at the moment.

hope this helps,

melissa

i have several thoughts but first one additional question for you. does your wife still have the original port-a-cath? i know fevers started before it was placed, but there's still a reason i'm asking. off to sleep for now but i'll await your answer & then reply at length.

your wife is certainly lucky & blessed to have you.

melissa

first and foremost, i'm sorry that you're feeling so overwhelmed at the moment, and quite understandably. my following comments are not in any way intended to minimize that you certainly have a lot on your plate.

i do have some thoughts - and quite a bit of experience - with part of what you're dealing with. some others who have commented have equated/ compared a literal dismissal/ refusal to treat by a physician to the type of dismissive attitude many of us have encountered re: certain symptoms, etc. over the years. while neither is enjoyable, i would argue strongly that they are not on the same continuum at all. being "blown off", not believed, having symptoms minimized, & whatever else can go along with the horrific dismissive attitudes many (or most) of us have encountered to at least some extent in our journey with dysautonomia is, in my opinion, inexcusable & unprofessional...amongst other things.

on the other hand, i have actually come to realize that a physician who will not treat someone is actually - at least on some level - making a responsible decision that, in the end, is the best thing for both him/ her and for said patient. i know that it doesn't always feel that way in the moment, particularly when you need a doctor and you've already called or interviewed more than you can count, but in the end it means that you won't be being cared for by a physician who really isn't best-equipped to care for - and work with - you to help you reach the best level of health you can possibly have. similarly i never fault a doctor for saying "i don't know". frustrating as it is, having experienced doctors who have too much ego to utter those words & instead treat me incorrectly (knowingly so) &/or decide that anything they don't know must somehow be my fault or a psych issue, i actually give a good deal of credit to those who are self-assured enough to say "i don't know". ideally s/he will then be willing to help you find answers &/or help you connect with others better suited to help you seek those answers, but in reality that's simply not always that case and ultimately it's better to find that out sooner rather than later. in a way someone saying they can't take you on (or continue to keep you on) as a patient is acknowledging the ultimate "i don't know." is it ideal? of course not. is there at times a component of the doctor simply not being willing to take someone on who will take more time/ energy/ effort? definitely. and perhaps most unfortunately, is it often done poorly, particularly if you are already an established patient and/or are in the midst of health issue that needs attention rather expediently? very much so. and yet in the end it's best for all. and when done "well"/ responsibly/ for the right reasons, i.e. b/c s/he truly doesn't feel equipped to properly be your health care provider/ partner is (in my opinion) one of the most humble things a doctor can do.

again i do NOT want to minimize how rotten it can be in the moment. it can't help but feel personal (even if/ when you objectively know otherwise) and can put you in a tough spot re: ongoing health management. i truly have "been there, done that" and it never feels good. i've been 400 miles away from my long-standing health care team (having just moved), unable to find a primary care doc willing to take me on for months with significant health deterioration occuring which forced me to use clinics &/or the ER for things i (quite knowingly) should have been going to my PCP for. in that instance i never did find a PCP willing to work with me until, during a several-week hospitalization, a nurse practitioner took finding me a doc on as her personal project, and even then it took her several weeks. most recently/currently one of the two major hospitals where i live has informed me that they are not equipped to care for me, aka i need to go somewhere else. the physician team who had cared for me - and quite literally saved me life - there several times informed me of this "development" via my current primary care doc (who is, thankfully, amazing) but it definitely jarred me, particularly when i was first told. ultimately, however, do i want to be at a hospital that doesn't feel able to care for me? no. so in the end i give them credit for being humble enough to acknowledge that reality. i could go on but there's no need. i just wanted to illustrate that my thoughts are not without "getting" it on a very personal/ experiential level.

my heart goes out to you and i hope that you soon find the doctor who can best care for & partner with you moving forward.

hugs,

melissa

good to "see" you ernie, and certainly very happy for you and all the positive changes in your life. enjoy and keep dancing!

melissa

just to clarify, dr. grubb's wife has NOT died. she does have a very rough cancer diagnosis but is still fighting. and while his wife's health has/ does/ will continue to affect his schedule, in reality the current proposed waiting time has been similar for years....long before she was ill.

and yes, if you truly want an appt, persistence is the way to go re: calling the office. they get non-stop calls from around the world - literally - and obviously no one cares as much as you so anyone wanting an appointment should not wait for them to call you (provided of course that you've met all requirements re: records, etc.)

good luck!

B)melissa

many congrats on your fellowship.

definitely very exciting on many levels!!

melissa

it might also help to know that propranolol, (also known as Inderal, it's brand name) is very short acting such that, if it doesn't end up being a good match for you, it will be out of your system within a matter of hours. i took a small dose of it myself years ago - in combination w/ other meds - and only stopped due to progression/ changes in my illness/ body, not b/c i was having any trouble w/ the med. i was actually tested on it - and then kept on it - while an inpatient research patient at vanderbilt years back (as part of a medication trial); on its own it didn't do well for me as it dropped my blood pressure too much (and thus increased my full-out syncope) but in combination with midodrine it was great for me for a period of time (b/c it helped lower my heart rate while the midodrine helped raise my blood pressure).

hope this helps,

melissa

p.s. i never had any increased fatigue while on the inderal/ propranolol. no side effects/ problems for me at all other than my not being able to tolerate it (specifically its hypotensive effect) without also having the midodrine/ vasoconstrictor on board. my dosing was similar to your but more frequent; i took 10mg every 4-4.5 hours - the same as my midodrine - b/c the med only lasts about that long.

jana et al -

concerta isn't an SSRI but a stimulant. it's in the same family - in fact quite similar at its core - to ritalin but is an extended-release formulation such that it very rarely is taken any more than once a day. as with ritalin it's official prescribing use is for those with ADD/ADHD but it is used off-label for some individuals with severe/ disabling fatigue caused by one or more underlying medical diagnoses. as an additional "side effect" these meds are, like midodrine, vasoconstrictors so that they very often raise blood pressure to some degree.

i agree that the reaction to florinef isn't one of the more commonly seen but do want to mention one additional possibility.....not so much for anyone who has more immediate/ acute/ short-term issues of extra fatigue (with taking florinef) but just in case anyone reading has noticed increased fatigue after taking florinef for a greater number of days or weeks. florinef can certainly deplete potassium in the body and when potassium is too low it can definitely increase fatigue/ exhaustion in at least some people. so...if you've been on florinef for a bit of time make sure & get your potassium checked the next time you have blood work!

hope this helps,

melissa

p.s. i'll try to find an old post i wrote explaining a bit more specifically the connection/ relationship between midodrine & ritalin as midodrine was in fact DEVELOPED as a result of decreased symptoms due to beneficial "side-effects" (higher blood pressure...in a good way!) seen in symptomatically hypotensive patients (folks w/ NCS perhaps?) when taking ritalin for other reasons (i.e. ADD/ ADHD). if i find it i'll post the link:-)

as others have mentioned there have been a LOT of discussions about vandy over the years - inpatient/ research, outpatient, etc. - so a search will give you more than you'll know what to do with. i went as an inpatient research patient a number of years back and wrote a pretty lengthy "report" of sorts upon my return; it's here on the board under "vanderbilt chronicles". of course some of the details in my ramblings are dated but from what i've heard a lot of the "big picture" info is still very much the same.

all in all people have had mixed experiences over the years (@ vandy).....good, bad, & everything in between:-).

of course there's no miracle fix/ cure to be had anywhere so if that's the expectation every place, every doctor, etc. will be a certain disappointment.

hope this helps,

melissa

i've done different things for different docs over the years. as others have mentioned it truly is the thought that counts......far more than the technical "value"/ "worth" of said gift, etc. the best gifts actually tend to be those that are a bit more creative, thoughtful, personal, uniquely meaningful, etc. this doesn't preclude something pricey but certainly doesn't necessitate it either. i guarantee that some of the most meaningful gifts i've given have been on the low (very low!) end of the price spectrum.

some great ideas have already been mentioned but i'll add some other that i have given in the past or which are on my list to give in the future (or when my finances allow!) there are few docs, nurses, etc. that merit true gift-giving in my life but for those that do i tend to really think about what i'm giving. for me different docs, nurses, etc. get different gifts, or at least different variations on a theme, b/c i'm big on gifts being personal not only on my side of the coin but for the recipient as well.

last but not least, while the thought/ intent of the gift-giving (doctor/ nurse or otherwise) is most important i'm also pretty opposed to giving a gift just for the sake of giving something to the extent that the cycle of buying, making, giving, receiving, trashing &/or accumulating things that few if any would actually use continues on & on & on & on...no matter how well-meaning one's intent. so while it's certainly not something that should be a stressor - financially, mentally/ emotionally, physically, socially, etc. - i do think we are all benefited by putting SOME thought into what we choose to give (purchase, make, etc.).

#1. a few years ago i gave all the docs & nurses that were an integral part of my care team (and literal survival) hand-made bookmarks and on the whole they received probably the best marks, reactions, etc. of anything i've ever gifted. the style of bookmark was/ is a "book thong" - something that i included for humor in the card/ note accompanying most of the gifts - and is a fancied-up version of a string with various beads & charms on either end (so that the string sits between the pages of a book & the beads/ charms stick out either end as mini-weights.) these can be made with a wide range of materials, workmanship, etc. but even using high quality beading/ jeweler materials, etc. they are quite affordable. for most of my docs/ nurses i included a sterling silver stethoscope charm on one end and a silver "thank you" charm on the other and then included a wide range of other beads, charms, colors, themes depending on the individual. if anyone is interested in additional info re: how to make these, where to get medical-themed charms, etc. i'm happy to help). these were definitely well-received by a wide-variety individuals (medical personnel & otherwise) - and years later they are still being used (and have even been asked to make more for one doctor to then give as gifts himself) - with a certain amount of forethought but not too much cost, time, energy, etc. such that i feel quite confident placing them top on my list of generally good/ safe gifting.

#2. if you're a quality knitter/ crocheter certain hand-made items in this realm can be great and can run the gamut of cost, time spent, style, etc. felting said knitting or crochet can produce some really great coasters and of course a million other things though unless you have a doc/ nurse that you've known long-term & REALLY know them on a personal level i wouldn't venture into anything that requires fitting, i.e. a sweater:-). i just finished knitting personalized christmas stockings for one of my nurses (for her 3 kids...at her request after she saw one i'd made for a cousin) and am currently working on socks for one of my long-time docs who has commented on ones she's seen me wearing (that i've made) but she knows i'm making them, approved the yarn & style, gave me measurements, etc. larger &/or more personal projects rarely work well as surprises (aka awkward moments for all involved) but if you do know what you're doing with a hook or needle(s) or the like and have a doc that might really like a quality homemade item with some input to color, style, etc you could always give them a sort of voucher/ coupon/ I.O.U. for said item &/or outright ask him/ her what sort of thing s/he might really like, use, etc. (with some direction re: what your realistic capabilities actually are). similar ideas/ approach could of course be applied to other skilled handicraft, i.e. sewing, quilting, needlepoint, etc..)

#3. i have made - as well as repaired - beaded jewelry for one of my long-term docs over the years. various patients give her pieces that often fall into disrepair, aren't well-made to begin with (not by way of being overly critical but by way of them not staying together), contain something that gives her a rash, etc. and then she always has something on her "i wish someone would make me something sort of like___________" from some picture she's seen, etc. she knows i do jewelry-making so as long as she's okay with my inability to reliably keep any sort of schedule health-wise (which, as my primary care doc, she is more than well aware of) i openly offer to help her with her repairs, special requests, etc.

i have also made pieces for a few other nurses/ doctors as unanticipated gifts, though only if/ when i have some definitive knowledge of what they do/ don't like, will/ won't actually wear, etc. for instance after one doctor commented on how much she loved a bracelet of mine on two separate occasions & joked she might abscond with it when it was off of my wrist during testing it was a safe bet that a nearly-identical item would be an appreciated gift.

#4. clever medical/ scientific/ health - themed gifts w/ a twist. i haven't given any of these items (yet) and think they would be more/ less appreciated, enjoyed, etc. by some more/ less than others but for the right person/ people they might be quite a hit? not to mention an ongoing conversation piece.

(note: if any of you share any of my docs you'd better not steal my ideas!....at least not w/out talking w/ me first:-))

Made With Molecules

handmade molecule jewelry, tie tacks, glassware, ornaments, etc.

Infectious Awareables

a WIDE variety of clever (& nifty looking!) but educational/ accurate items ranging from stuffed plush microbes to neckties to scarves to t-shirts & more

Giant Microbes

direct link to the stuffed plush microbes large & small (also included on the infectious awareables page above)

medical neckties, mugs, etc.

and of course endless other online sites with a wide range of medical-themed neckties & more

#5. if a doctor has a particular collection s/he is fond of or a hobby s/he is obsessed with, etc. gifts along these lines CAN work well IF carefully thought out &/or investigated. but just b/c someone has a lot of #1 doctor mugs doesn't mean s/he wants more of them so tread lightly, research cleverly, etc.

general tips/ closing thoughts

-don't stress but do think if & when it is a doctor/nurse/therapist/aide you truly do want to acknowledge.

-it's not about the cost. as has been mentioned by someone else a nicely presented, well-thought-out note can very much be a gift in & of itself.

-use your resources. don't hesitate to ask gift-giving-related questions of a doctor's assistant, secretary, nurse, esp. if said side-kick has been with the doc for the long-haul. this can be a great way to find out what NOT to give too (aka doc's least favorite repeated gift year after year!). but DON'T FORGET to then also remember said assistant, nurse, secretary, etc. in at least a small way (something that is always a nice idea!!)

-set your own schedule. don't feel boxed in by particular holidays for giving your gifts. in most cases it's much better (more personal, memorable, etc.) to hand-deliver doc's gift at your next appointment in march than it is to drop it in the pile on his/ her desk amongst the mid-december rush.

hope this helps!!!

melissa

i'll come back w/ my own response in a bit, but i agree that the numbers on the poll are not likely to give any sort of "real life" picture of members. polls on the forum are never official, scientifically accurate, etc. but BMI options across a more realistic spectrum would likely give at least somewhat of a better picture of where members fall on the underweight/ average weight/ overweight continuum.

misspatient if you would like me to change the poll options to better reflect the overall balance of individuals (i.e. options for severely underweight, underweight, average range, slightly overweight, etc.) let me know and i'll be happy to do just that. it wouldn't take away from what i think you're looking to glean from your question(s) and might in fact add to the depth & usefulness of the info you receive.

jana, i fully agree with you also that BMI is far from a perfect measure of size, weight, health, nutritional status, etc. but - however flawed - it unfortunately is one of the better solitary measures available at this point in time. more detailed info that encompasses what one's BMI "really means" is of course much more meaningful and can of course be added in comments/ discussion by anyone who would like to divulge/ explain/ detail their situation further. i know that i will do so myself. (along the lines of what you mention, i know that years ago when i was able to be more actively athletic the BMI calculations were horribly "off" for me as any representation of "health"; ironically now that i'm far less healthy i technically have a "better"/ "health" BMI but no one that knows anything about me past & present would dare say i'm healthier now than when super-muscled-triathlete-rower me wavered at the edge of "overweight".)

hope this helps,

melissa

glad you saw your doc & hope you're soon feeling better.

while it's a bit after-the-fact now, the "official" answer re: dysautonomia & antibiotics is that there is no more chance of any negative reaction than there is in the general population. as you've seen already there are of course individuals with experiences that range from A to Z (and everywhere in between).

personally i would have died years ago without hard-core, intravenous antibiotics (many times over) but i am certainly the exception rather than the norm. that said, antibiotics certainly have there time & place when used appropriately and generally speaking anyone with a chronic &/or serious underlying illness will be worse off if an underlying illness goes untreated (as long as it is an illness that requires/ responds to antibiotics in the first place, i.e. NOT a virus!!). this doesn't preclude the rare reaction but fear of such a reaction is certainly no reason to not take something when genuinely indicated. and a "negative" reaction does not even always mean an abx is off limits....depending on the specific circumstance. (for instance, i do react allergically to one particular antibiotic, but the allergy isn't life-threatening & the bacterial infection it helped kill of was, so carefully monitored i'm still much better off with it than without.)

at the other end of the spectrum antibiotics are very much OVERutilized this day & age so it's important to only take them when indicated by positive cultures, etc and not "just" feeling ill, mild fever, etc......even for those with underlying illnesses that make being sick more of an issue than the general population. it is no exaggeration to say that overusing antibiotics will directly increase the chances that they will not work when you do need them...not only on the global spectrum but for each person individually.

hope this helps, & feel better soon!!!

melissa

dr. shields is my fave in cleveland, though in some ways in may depend on what you are looking for in a doctor/ eval. i have written longer/ more detailed replies re: cleveland docs, options, etc. previously so you may want to do a search for those. i don't have personal experience w/ dr. faoud but have worked quite extensively w/ both dr. chelimsky at university hospitals and dr. shields at cleveland clinic (as well as a number of other specialists in cleveland.) if i have a chance i'll try to find my earlier ramblings & post a link myself.

hope this helps,

melissa

glad that your appt. went better than expected & hope that you continue to have a good relationship w/ the doc....it definitely sounds like you're off to a good start!!

congrats...it CAN happen!

melissa

there was a similar question awhile back. the specific question posed then was "when to head to the ER?" but many/ most of the issues at hand are the same, as are the main points in my reply/ discussion. here's my reply as copied & pasted from that post:

as many others have said in various ways, ERs are truly not designed for those with POTS or most other day-to-days issues related to any of the many types of autonomic dysfunction. in my pre-diagnosis & early diagnosis years i too had my fair share of ER visits, many against my will when i would full-out faint (i was 17 & away a college so legally couldn't refuse even when i came to), etc. i know what it's like to deal with docs who have no clue what's going on & can empathize with all who have been belittled. but that said it has been many many years since i've gone to an ER for something related to dizziness, fainting, feeling cruddy, etc. and in all reality ERs are not intended to deal with any type of chronic illness, so it's not only POTS, NCS, syncope, dizziness, etc that they're ill-equiped for. without wanting to offend anyone, nor keep anyone from an ER trip if/ when it's really necessary, ERs are not meant for management of day-to-day symptoms...no matter how frustrating they might be, no matter how much you might need/ want an answer, etc. they are meant for life &/or limb threatening situations & other like emergencies wherein, in theory, life or limb would be threatened if someone didn't go.

now....of course i realize that many people have the fear that their life is truly in danger & go for that very reason, but one good guideline (most of the time) is if you've been dealing with a certain symptom repeatedly, there is very little chance that all of a sudden it will be dangerous when it never has been before. this is even more true if it's something that has been evaluated &/or discussed with a doctor. obviously there are exceptions to this rule, as there are to most rules, but i'm sure you get my point.

i know that it can feel HORRIBLE to have any measure of the crazy symptoms that our crazy heart rates, blood pressures, nausea & vomiting, palpitations, etc. but more times than not they are NOT life-threatening. and at the risk of sounding glib, however much they might make you think that you feel like you're dying, i can assure you that they don't come close to really making you feel like that at all. if you were really on the cusp of dying you would know. i promise. i've been there for real & it makes all the other stuff pale in comparison. i know it's hard to think that you could feel worse but you can. i will spare you the blow-by-blow description of the "almost dying" feeling but trust me that, if you're really there, you will KNOW - as will any/everyone around you - that there is no choice but to call 911 asap...no passing go, no collecting $200, no time to even grab your essentials.

drama aside, there are of course times where the ER can be a necessity, and these times can vary based on one's individual situation. for example, a short-term fever of 102 with shakes & chills, as miserable as it might be, doesn't necessitate an ER trip for most people, but if someone has just had surgery & the surgical site is looking bad or if someone has a central line or someone is a transplant patient or other specific things then the same scenario is almost always an autonomic ticket to the ER. that said, there are exceptions even to that, as i've had many a fever up to 104 without going to the ER. the details of my scenario with regard to that aren't important for this discussion; i'm just making the point that there are very few, if any, absolutes when it comes to "when to go to the ER". i'm lucky in that i have a medical care team that allows me to stay home when 99.9% of the population would be sent to the ER...for me a huge blessing b/c with all i've had going on at times many doctors would have had me in the ER (as well as admitted) for weeks & months on end (more so than i already was that is). on the other hand my doctors, family, & i knew that we were taking some risks in some of our decisions not to go that i would certainly never impose on anyone else; i/we decided that some degree of gambling with my health and even my life was a fair trade for the improved quality-of-life that came with my being at home rather than in the hospital more often than i already was. but really this isn't about me....i'm just giving examples.

other than times that i have been ill enough to warrant direct admission to critical care or ICU there have been several other scenarios in recent years when i begrudgingly went to the ER, received necessary treatment, & given the particular circumstances don't regret having gone & would do so again (within the specific situation).

two general categories that could prompt an ER trip in particular circumstances, though, might be the following:

1. IV fluids: while i have central IV lines now & am dependent on IV hydration/ nutrition day in & day out, for the years that i had serious GI issues but didn't yet have IVs of my own at home i generally had it set up via my treatment team to receive IV saline (& at times electrolytes) on an outpatient basis without going to the ER; that said there was one time right after moving hundreds of miles that i didn't have my new set-up in place & hadn't kept ANYTHING down in days. i tried to use an urgent care place rather than an ER but per their blood work my electrolytes were dangerously wacked out & couldn't be corrected by them in the hour they were still open so they all but forced me to the ER that was across the way; i'm stubborn but not stupid & i knew it was something i needed to do. so while i highly recommend anyone who can to set up a way to get IV fluids on an outpatient basis other than via the ER, there may be occasional times that it can't be avoided.

2. potential head injury: while the scenario that elicits my being concerned is MUCH more extreme now than it was years ago, there would still be certain signs & symptoms that i would say warrant ruling out a head injury after a fall/ faint that includes a head hit. many years ago i was convinced over & over again that any time i hit my head i "might have a concussion...you never know" despite the fact that knew darn well i was fine. over the years i learned that there was no need to be continuously scanned "just in case" & my doctors agreed with me, but are there scenarios that still might make getting checked out after a fall the logical (& smart) choice? of course. if there's bleeding involved (beyond a scratched knee rolleyes.gif , that is), cognitive disturbance after a hard knock on the head (that's different than one's "normal" post-syncope state of confusion), a fall that messed with one's neck/ spine (i.e. going head-first down a flight of stairs) wherein there's subsequent loss of feeling, etc. you get the idea.

i hope i didn't offend anyone with some of my rather straightforward comments as that was definitely not my intent. ultimately i was just trying to stress that, regardless of how horrible it can feel to be on the side of the patient, ERs aren't the place to the answers that many might be seeking. E.M.'s post articulated this, as well as the preferred & more effective alternative, very well. that said, i would never want to be the one who keeps someone who really needs to be heading to an ER from making the trip b/c i've been the person who, as stubborn as i am, has held off going once or twice to the point that my hesitation almost killed me (though, if i'm honest, i knew long before that i should have been on my way). i suppose the old "better be safe than sorry" does technically hold true, but at the same time i think it needs to be handled with care as i think it may be used at times as an easy way out when in reality the real need is for better day-to-day management, understanding, & tolerance of symptoms that an ER simply won't & can't be of any help for. b/c while it's by far not the only thing wrong with our health-care system, the mis- &/or over-use of ERs is one component of things....

but i'll get down off of my soapbox & shut up now. promise.

melissa

the entire post can be found via the following link:

"What Warrants an ER Visit?"/ Nov 2008

i see that no one has mentioned marinol, a still-fairly-new prescription med that is totally legal in every state (w/ a script of course), better regulated, etc. by no means am i saying that i wouldn't try the "real thing" if there was any inkling that it would significantly improve my life - i would - but i wanted to inform anyone who might not be aware of the prescription option. fyi i did try the marinol for GI symptoms (related to my severe dysmotility) several years ago and for me it did absolutely nothing in the GI department while making me feel a bit out of it overall (not in a good way); the "out of it" wasn't horrible & - had my GI symptoms improved dramatically i would have gladly tolerated it at time - but seeing that i wasn't getting any benefit there was no sense in continuing.

for those who don't know, marinol is a synthetic replication of THC - the active component of cannabis that most folks (medicinal or otherwise) are after, so to speak - and was originally developed (and is currently approved for) severe unrelenting nausea &/or anorexia (lack of appetite) in AIDS patients &/or cancer patients undergoing chemo. personally i had no trouble w/ insurance coverage but i have heard of some others in the GI-dysmotility world having to work a bit harder for approval (though still having success in the end); i should clarify that i was already dependent on IV nutrition & hydration by the time we tried it such that i had severe dysmotility that was very well documented (as were the complications/ hospitalizations it was causing, either directly or indirectly).

bottom line in my book is that i would want - and highly recommend - at least one medical professional to be "in the loop", even if not technically able to recommend/ prescribe for anyone considering trying anything new of any sort to treat any already-existing diagnosis (and/ or related symptoms); i am familiar with multiple other situations (personally &/or from others) in which a physician couldn't officially give an okay or recommendation for a med, drug, etc. (something overseas, cannabis, etc.) but s/he could/ would still have a hypothetical sort of discussion with the doctor (or NP, PA, etc.) in order to at least have unofficial confirmation that there aren't any strong contraindications, problems, etc.

hope this helps & let me know if you have any other questions re: the marinol &/or re: GI dysmotility issues in general as i have definitely "been there, done that" (and continue to be!), both personally & via volunteer involvement w/another non-profit supporting patients w/ GI dysmotilities (gastroparesis, intestinal pseudo-obstruction, etc.).

melissa

to clarify my above statement re: the info being from a credible/ reputable source i suppose i should clarify as i sort of merged my thoughts into a sentence that wasn't what i really meant to say. (not that anyone is particularly concerned w/ my comment, but just b/c - particularly as a moderator - i don't want to put my 'stamp of approval" so to speak on a site unintentionally. and so you don't think i'm completely nuts re: my assessment of what constitutes a reputable/ credible source!)

anyhoo....what i MEANT to say (and will proceed to go back and edit/ correct my post to say) was that the post/ warning - and it's included reference/ warning from the CDC - pointed toward the original/ credible source of the warning as opposed to being solely some fly-by-night site writing it's own scare-mongering articles with no reference whatsoever to anything more official. this does NOT mean i think the CDC is infallible and i'm more than aware that they (and many other like organizations) are, as a rule, overly cautious when it comes to said warnings such that i certainly take them with a grain of salt and move forward accordingly.

sorry for any confusion re: my original post. i was typing/ posting quickly and sort of merged/ mushed thoughts/ comments together in ways that were best explained more clearly.

i too have been able to find more credible/ reputable/ official medical/ scientific info/ commentary re: concerns about the shot. of course none of the info is definitive nor does any of the concern guarantee problems for any or all who might get the shot. like i said earlier i am leaning toward no but am not yet certain and know that i could be swayed. BUT - unlike some things - i still feel accurate in stating that there is more concern amongst the professional medical/ scientific community about this shot than about other things (as it is always possible to find some individual or group to raise concerns/ fears about ANYthing, regardless of the merit of said concerns).

g'night,

melissa

thanks for sharing this info. i'm often leary of fear-mongering re: vaccines w/ proven track records and while this particular notice/ article appears to be from a fairly biased/ one-sided site it references the CDC's warnings which, while far from infallible, are far more reputable/ unbiased than some others with at least some measure of credibility.

the general issues of potential concern (more so than any one organization's warnings) will definitely inform the conversation i'm due to have w/ my doc re: our "shot decisions" for the year. i've never had any trouble w/ the standard flu shot & given my history of life threatening pneumonia/ pleural effusions will almost certainly get it again but will be thinking loooooong and hard about the newer variety (and leaning heavily toward not getting it; it will take some convincing from one of my docs that i trust the most to sway me otherwise).

particularly as many dysautonomias are considered to be "kissing cousins" so to speak of guillian barre syndrome; i know that we've had several individuals with GB in our neighborhood and they are generally grouped with myself and several others w/ other dysautonomia diagnoses for purposes of disease classification (in relation to potential environmental factors/ causation).

i definitely agree that warnings/ concerns are often blown out of proportion - whether in regard to the flu itself or in regard to potential dangers of the vaccine(s) - but also belief that most (if not all) warnings/ concerns are based on/in some grain of truth/ reality. and i don't think it's far-fetched that neurologically-related concerns might be of more concern/ risk to someone who already has a less-than-healthy nervous system. proven? no. possible? i think yes. but by no means as anything definite.

as such i think it does come down - yet again - to a very personal decision between one's doctor(s) and one's self (and potentially one's family). in this case i don't believe there is one absolute right answer and think it's a bit naive for anyone to proclaim they are the bearer of the "absolute right thing" for something still so new.

good luck to all who are (or will soon be) in the process of decision-making.

thanks again,

melissa

no machine will be able to give you a reading if you're past a certain point, moving around too much, etc. but some are definitely better bets than others. in many (most) cases you should be able to try the machine and - if it doesn't work to your liking - return it so while that is a hassle and does leave you where you started at least you're not throwing away money over and over again.

while i'm by no means saying it is the only brand that will work for you, dr. grubb told me years ago - and i've heard it said by other cardios since - that a consistently reliable/ good brand (that is also affordable by an individual vs. a hospital or research lab) is Omron; over the years i have seen them sold at a variety of stores both in person and online.

the additional info/ points are things i have learned over the years from a variety of physicians/ medical professionals, medical journal sources, etc.:

#1.) none of the more "creative" measures of measuring one's BP (on a finger, a wrist, etc.) are NOT ever going to be as consistently accurate as the tried and true upper arm measurement. the others may seem "easier" but that's here nor there if/ when they won't give you a reading or - perhaps worse - give you a reading that's totally off base

#2.) while fully automatic varieties that accurately take a BP at levels very low, very high, & everywhere in between DO exist, they are hospital-grade models that are likely unaffordable for most individuals in the home environment. as such a model that has fewer "automated components" will be most likely to give you accurate readings outside of the more typical number ranges. the most accurate/ reliable bet is actually an old fashioned cuff requiring manual inflation, listening/ reading w/ a stethoscope, etc; this is unlikely to be realistic though for many/ most of us for various reasons (hard if not impossible to do independently, esp. if/ when not well, must know how to take/ read results correctly, etc.). as such the next best bet is a machine that you must inflate manually but which then takes the reading on its own; i can't tell you why these tend to work better than machines that also inflate on their own but i can tell you that from the experience of several of my physicians, other patients, & myself that they do....perhaps it's just that there's one less automated component that has the opportunity for confusion re: how much to inflate, etc. in relation to less-than-typical results.

so....end result? an omron arm cuff with manual inflation would be my recommendation, though i would still always recommend a purchase with the option of a return. for what it's worth i've had mine for more than ten years and other than having to replace the batteries several times (AA i believe; nothing unique or particularly pricey) i haven't had any major problems with it, it seems to take readings at lower levels than some other home machines, etc. nothing you buy at home will be foolproof or perfect - heck even the multi-thousand dollar gadgets in hospitals aren't error-free - but there are definitely some options that will suit you more than others. fyi i believe my machine cost around $50 (give or take) when it was purchased 10+ yrs ago; i'm pretty sure you should be able to get a good one in the $40-60 range depending on how much comparison shopping you're willing & able to do.

hope this helps & good luck!

melissa

while my "answer" is by no means a definite/ exact answer, since you asked i'll offer one theory of connection for at least most of what is on your list.

migraines are a well known component/ accompaniment of POTS for many (though not all) individual; in other words i'd hazard to guess that most POTS/ dysautonomia gurus wouldn't even list the two as separate entities on your list. no it's not quite as standard/ common as having issues w/ being upright but it' still high up on the list.

moving on, it is fairly well agreed upon across much of the dysautonomia community (specialists, researchers, etc.) that a subsection of POTS/ dysautonomia patients have an autoimmune connection/ causation to or behind their illness/ diagnosis. for most individuals this is a theory rather than anything that can be proved definitively via any type of testing but even in the past 10+ yrs a lot of progress has been made (as there are in fact some autoimmune types of dysautonomia that ARE currently diagnosable via specific testing); the theory then follows that there are likely other types that will be specifically testable in the future, aka 10yrs ago tests/ diagnoses they have now didn't exist so it's not unreasonable to think that 10yrs into the future some will exist that aren't yet quantified today.

IF your POTS/ dysautonomia (and i do realize it is an if that will likely go unanswered for you for at least a period of time) is of the autoimmune etiology then several of the other items on your list can be more readily connected b/c both ulcerative colitis and interstial cystitis most often fall under the category of autoimmune illness/ disease/ diagnosis. it is generally agreed upon that an individual with one autoimmune diagnosis is more likely to have other autoimmune diagnoses (one or more).

obviously my theory is only that for you specifically, though the info i shared re: autoimmune illnesses - in relation to POTS/ dysautonomia, in relation to UC & IC, & in general - is considered factual as far as anything in the medical world ever can be certain (i.e. i didn't make up the theory/ possible connections; i did "make up" in a sense the possibility that you & your situation/ diagnoses fit into the proposed grid.)

last but not least i am curious re: how you were diagnoses with ulcerative colitis, specifically as you mention never having had any bleeding? i am particularly curious b/c i was actually misdiagnosed w/ UC myself a number of years back, the short version being that i did have colitis that required hospitalization and did require treatment for a period of time that is most often used in patients w/ ulcerative colitis. after that 4-6 months period of time however i have never had a problem aside from visible scarring in a small area of my colon from the past problems/ flare-up; as such, while my diagnosis of UC was not necessarily "wrong" when it was given, in hindsight it was incorrect and instead we know that i instead had an account bout of colitis. not something that would have changed a thing when it was happening but at least one chronic/ long-term illness/ diagnosis i don't have to manage or even stay aware of on an ongoing basis.

hope this helps,

melissa

i've taken without any problems. zilch. aka i couldn't even tell i was taking it.

i hope your son is feeling better soon & that somehow you manage to avoid the bug altogether. the odds may be against you but - trust me on this one - anything is possible!

melissa

i have seen dr. chelimsky in the past (originally when i lived in cleveland and for a short time after moving away) and had mixed experiences....ranging from really quite wonderful at times to rather disappointing. i don't at all regret my time under his care and he played a huge role in my having the opportunity to try a not-often-used (and VERY time-consuming, EXTREMELY expensive) treatment; unfortunately when i didn't turn out to be a "success story" (after said treatment) his disappointment/ frustration in my continued deterioration seemed to have an inappropriate degree of affect on my continued care. i am still thankful though for the positive role he played in a particular period of my care/ treatment. additionally i know that i am not the only person on the forum who has seen him so you may want to do a search - just use his last name - and you'll find others' experiences (as well as other comments i've made).

the only other physician on your list with whom i am at all familiar is dr. faoud at cleveland clinic, though i have never seen her personally. b/c of the systemic complexity of my health situation and the fact that i was many years past an initial evaluation/ diagnosis, it didn't make a lot of sense for me to pursue seeing her by the time i moved to cleveland. dr. faoud tends to have a reputation - amongst many patients as well as colleagues in the dysautonomia specialty field - as being a very thorough diagnostician (versus investing extensively in ongoing/ long-term follow-up care) and she is a cardiologist, both attributes which are not necessarily negatives but which meant she wasn't the best person for me to connect with at that time in my life; i had already been a patient of dr. grubb's for many years so was already being "covered" so to speak by a cardio/ EP and b/c of the systemic involvement/ complexity of my evoloving medical situation (and per dr. grubb's request) i needed to have a neurologist on board. for this reason i not only saw dr. chelimsky but also saw dr. robert shields, a neurologist at cleveland clinic who isn't necessarily one of the "it" names in the dysautonomia world but who is in fact very well-versed; he is the director of the autonomic testing lab at cleveland clinic and i while no one is perfect, no doctor has all the answers, etc. i had overall good experiences with him and if/ when there is ever a need for me to have an "autonomic connection", so to speak, at cleveland clinic (always a possibility as all of my ongoing nutritional/ IV needs are managed there, it is my "home hospital" for any inpatient care wherein i'm safe enough to make the trip to get there, etc.); i know at least a handful of others who have had favorable experiences under his care as well. i know you didn't mention his name but if he is an option for you insurance wise (perhaps likely since you have another cleveland clinic physician on your list?) i am generally very comfortable recommending him, though if you are someone who has exclusively cardiac-related symptoms with no other components of dysautonomia i suppose it might make more sense to start with the cardio route? (that said i am confident that dr. shields would never hesitate to refer to another specialist if/ when needed.) as i mentioned re: dr. chelimsky i know there have been other discussions/ comments re: dr. shields on the forum so if you're curious it might be worth your while to take the time to do a search (again using his name, either just "shields" or perhaps "robert shields" for a bit less overwhelming results given the more commend word as his last name).

i will tell you that - having been around not just the forum & DINET but the "world of dysautonomia" as a whole for many years - i have never even heard of the other physicians on your list. while this does mean that they are not likely the "top dogs" so to speak in the dysautonomia world, it does NOT mean that they might not be absolutely WONDERFUL. dr. grossman most likely is in the same office/ lab as dr. chemlimsky. dr. deRan truly must be fairly new in specializing in dysautonomia as his address is very close to where i grew up/ lived when first getting ill/ live now (all one in the same, and also just down the street from dr. grubb) and for various reasons i generally have been very aware of any physicians in this area with even a cursory interest in dysautonomia so it actually really peaks my curiosity to hear a new name mentioned. i'll definitely be asking around (amongst my local "dysautonomia connections") and will let you know if i end up with any particularly crucial info for you. all of which is to say though that he might be great. often the best doc is one who isn't the "best" or "top" doc but simply one who has some level of understanding combined with a heartfult interest and the time/ ability to manage ongoing treatment/ care over time (if indeed that is what you're looking for; if you're just in search of a one-time diagnosis then that's another story altogether.)

all of which leads me to a few questions (which i suppose i should have started with now that i think about it ). what are you looking/ hoping for in the doctor you are looking to see? diagnosis? comprehensive evaluation/testing? ongoing treatment adjustments & relationship....either w/ you directly or via your primary care physician? do you have a primary care doc who is willing & able to handle the day-to-day aspects of your care if/ when there is some direction/ recommendation from a specialist? your answers to these sorts of questions are actually quite significant in terms of your decision re: which specialist to pursue. i'll try to check back & reply in kind if/ when you answer as your answers may slant my recommendation(s) one way or another; if i seem to disappear don't hesitate to send me a message as it can be easy to loose track of posts, esp. if/ when the forum gets particularly busy.

last but not least, where are you located? it's by no means the only factor in making the best decision but at times can certainly play a role, i.e. when all else is equal why not minimize travels. as i mentioned i was born in, grew up in, and - after 9yrs away (aside from visits) - have been back in ohio for several years now so i'm quite familiar with the regional medical options - dysautonomia & otherwise - particularly those across the northern portions of the state.

good luck w/ your decision(s) & don't hesitate to let me know if i can help in any way,

melissa

yes, definitely a helpful resource. (doesn't include the most recent research at this point but nonetheless VERY helpful.)

we actually have it listed here on the forum under MightyMouse's/ Nina's "Frequently Asked Questions - help yourself to answers/ Links to many sources of information" which is one of the "pinned" topics toward the top of the discussion forum.

the direct link is: FAQs - help yourself to answers and/or it can always be found in it's pinned location.

the NDRF handbook link is toward the top of the list but there are endless other links that are immensely helpful as well as a list of commonly used abbreviations that many find a handy tool (under the same topic/ link, toward the bottom). for anyone who has not yet at least browsed this post/ link i HIGHLY recommend doing so.

along the same lines i'll take this opportunity to encourage any and all who have not yet read the forum rules and/ or the "helpful hints" topic (also pinned) to make both of these top priority reading as well. in the long run looking over both will make your experience here on the forum much more pleasant.

melissa

Ladies -

While I realize that all who have responded mean well in their own way, I need to remind everyone of the importance of ALWAYS maintaining an attitude of kindness, courtesy and respect toward other members. The relevant portion of the Forum Rules, for newer folks who have not read them & for any who might need a refresher, state the following:

Respect For Others

A tone of kindness is appreciated in all discussions. Please do not post information regarding anyone else's health without first obtaining that person's permission. You agree, through the use of DINET's services, that you will not post condescending, defamatory, obscene, offensive, violent, racist, profane or illegal material on this forum. DINET encourages you to use good judgment, but please do not be judgmental in posts.

You agree to refrain from flame wars, debates and the discussion of "hot topics," which are likely to provoke debates. Common hot topics include, but are not limited to, politics, abortion and religion. Asking for prayer is allowed, but please do not use this forum to promote your religious beliefs. Posts dealing with sex-related issues should have a tone of maturity.

DINET's forum has a built in censor that removes profanity and replaces it with "****." Attempts to bypass the censor by the misspelling of inappropriate words will be edited.

Clarification: The following definitions are provided to clarify DINET's forum rules. However, DINET's forum rules are not necessarily limited to these definitions. Definitions are from The American Heritage Dictionary of English Language, Fourth Edition.

Condescending: 1. "Displaying a patronizingly superior attitude."

Defamatory: "To damage the reputation, character, or good name of by slander or libel."

Obscene: "1. Offensive to accepted standards of decency or modesty. 2. Inciting lustful feelings; lewd. 3. Repulsive; disgusting."

Offensive: "1. Causing anger, displeasure, resentment, or affront. 2. Making an attack. b. Of, relating to, or designed for attack."

Violent: "1. Accomplished by force: coercive, forcible. 2. Extreme in degree, strength, or effect: desperate, fierce, furious, intense, terrible, vehement."

Racist: "1. The belief that race accounts for differences in human character or ability and that a particular race is superior to others. 2. Discrimination or prejudice based on race."

Profane: "1. To treat with irreverence. 2. To put to an improper, unworthy, or degrading use; abuse."

Illegal: "1. Prohibited by law. 2. Prohibited by official rules."

Judgmental: "1. Of, relating to, or dependent on judgment. 2. Inclined to make judgments, especially moral or personal ones."

Public Disagreements with Other Members

You agree that if you ever have a disagreement with another forum member you will not attempt to persuade other members to take your side of the argument or publicly post about it on this or any other forum, blog or website. Please be mature and talk to any member you disagree with privately.

The rules in their entirety can be found via a link at the upper left portion of the forum screen &/ or directly via the following link: DINET Forum Rules.

This discussion thread has started to veer off in the wrong direction and all posts in violation of the the above-specified rules will be edited (modified &/or deleted) accordingly.

Consider this the "friendly (yet serious) reminder" both collectively and to any/ all individuals needing said reminder. If subsequent posts continue to be problematic they will be deleted without warning and if the problem persists discussion-wide the thread will be closed for further comment and/or deleted entirely.

Thank you for your understanding & cooperation. As always an questions can be directed toward the forum administrator (Nina aka MightyMouse) and/or any or all of the moderators (myself: Melissa aka Sunfish, Rachel, & flop).

melissa aka Sunfish, Head Moderator

p.s. to Elfie: know that your original post & question was in no way in violation of forum rules. i wish you the best in the midst of what is undoubtedly a very difficult situation and encourage you to remember that - first & foremost - you have to be able to stay safe - physically AND mentally/ emotionally - and to take care of yourself & your health at at least a basic level before ALL else. ((hugs))

maggie -

are you referring to colonic cleansing as a treatment modality (either one-time or ongoing) or solely on a one-time basis in order to aid with what is necessary for a colonoscopy? depending on what you're looking at (in terms of purpose) my answer/ response (and the potential medical/ health implications of what you are asking/ considering) is vastly different.

i'll keep an eye out for your clarification and will then reply as appropriate....

melissa