Jump to content

The Next Step


Rachel
 Share

Recommended Posts

My doctors visits and tests are winding down. It is nice to be getting somewhere, but sad to be getting nowhere at the same time. It appears that I have reached the end of the road of treatment here in GA. It only took 4 months!

In the past four months I have had 4 wonderful doctors. I've had a pcp who cares and was proactive in getting help for me. My second doctor was an internist who was excellent. His wife is actually disabled from NCS, so he is knowledgeable and very understanding when it comes to dysautonomia. Recently I also saw a sleep specialist who was an excellent doctor and knew her stuff, yet my case surprised and baffled her!! Most recently I went to an electrophysiologist who treats POTS. All of these doctors have been knowledgeable in their areas of practice, very kind, and honest in their evaluation of my condition. But they are now referring me elsewhere. The two doctors that treat POTS and other dysautonomias are telling me over and over "You need to go to Vanderbilt" or "You need to see Dr. Grubb." It is time to go see the best of the best.

And so I am getting nowhere in the sense of not being able to find many answers here. Yet, I am getting somewhere. We now have more answers of what is not wrong with my health, so we can stop searching in those directions. I've gotten referrals to both Vanderbilt and Dr. Grubb. My appointment with Dr. Grubb was made months ago. The appointment was made with Vanderbilt only recently.....for the same day as my appointment with Dr. Grubb!!! :o That made me laugh. You have to keep up your sense of humor in all this!! :) So I'll be changing one of the appointments to a later date.

My question is, if I'm only able to go to one doctors appointment this year, which one would you recommend? Dr. Grubb or Dr. Biagioni at Vanderbilt? Has anyone here been to both? Would the care be similar and I should just go to whichever one I'm living closest to at the time? (We may be moving before my appointments...I might not be able to do two appointments this year...it's a long story...)

I feel very ready to go to Dr. Grubb or Vanderbilt. I'm ready to go to "the best of the best" and get the rest of the answers that can be found at this point. I'm want to move on with life, whatever it may be like.

I'm thankful for all of you and the opportunity to share this with those who understand. It just isn't the same telling healthy people! Whenever I go to Dr. Grubb or Dr. Biagioni I will let you all know how things go and what I learn.

Rachel

Link to comment
Share on other sites

Rachel, thank you for the post! In someways I am in the same boat as you are. My dr doesn't know what to do either and he told me I need to think long and hard about going to Vanderbelt, Mayo, or Dr Grubb, but isn't sure which is best and how soon I could get in

This is all so frustrating, but you are not alone. If anyone of you could answer my question also, is there anything different they are doing at these places?

Any studies on new meds?

Which dr is the best?

Any advice would help

Madeline

Link to comment
Share on other sites

I'm in a similar position too. My local cardiologist was really good in suspecting POTS from my history and doing the tilt test to confirm. He has tried lots of different meds but we haven't got things under control yet. He can't understand why I am not "sorted" on Midodrine and doesn't seem to accept that there are symptoms like fatigue, brain fog etc only that there is a tachy and low BP. He also has never heard of Dr Grubb or Dr Low - not sure how you could read much about POTS without reading their articles.

Anyway he has admitted that he doesn't know what to do for me now and on my request has referred me to Prof Mathias in London. I have no idea how long I will have to wait for an appointment or if he will be able to help but I hope he can.

Good luck to anyone else waiting for super-specialist appointments, lets keep our fingers crossed for some answers!

Flop

Link to comment
Share on other sites

Madeline,

I'm in the process of applying to be a research patient at Vanderbilt (this is different from going to the outpatient clinic and seeing a specialist). There is a form online that you can print and fill out in order to apply to be a research patient. Yep, one of the things they do is med trials, which sometimes helps the patient find a good medicine. If you're interested, I'll send you the link to the form.

I'm not sure how things work at Mayo. I haven't looked into that yet because they're farther away from me.

I hope you can find some help and further treatment.

Rachel

Link to comment
Share on other sites

rachel (& madeline) -

dr. chelimsky (autonomic neurologist at university hospitals in cleveland, oh) told me i've seen more of the docs that attend the national/ international autonomic society conferences/ meetings than any other patient he's seen. so with that bit of trivia it's probably not a surprise that i have seen dr. biaggioni (as a research patient at vanderbilt) as well as dr. grubb. and for better or for worse, a lot of other docs as well...depending on where i lived at the time & other assorted factors. currently dr. grubb is my autonomic doc but that's not unrelated to the fact that i live about ten minutes from his office.

i'm really dragging at the moment (perhaps from recovering from a trip out of the house saturday &/or as i seem to be fighting a tube site infection) & have to do my meds (which is more than popping pills since it's via j tube) but that's more than you needed to know:-) all in all i just wanted to tell you that i WILL respond to your question(s) more in depth.

i wanted to at least post a short note now b/c i'm finding that i have a tendency lately to read everything on the board with the intention to getting back to replying later...and then later doesn't come until the post has drifted away. so if you don't hear from me "soonish" feel free to shoot me a reminder PM.

:o melissa

Link to comment
Share on other sites

Hi Rachel,

Wow, finding 4 great docs in GA who all "get it." Unbelievable! I may send you a PM for referrals. Unfortunately, I haven't been to the other docs you mentioned, but I leave Vanderbilt as my last resort option if things really flare again. I understand where you are and definately think you should follow up with both Vanderbilt and Dr. Grubb. You aren't getting better and you are too young to be so severely disabled.

I hope you get some good concrete info to help you make up your mind. Keep us posted on what you decide.

Julie

Link to comment
Share on other sites

I would go to a doctor who could actually provide guidance to your local doctors. I do not have any experience with being in a research study at Vandebilt so perhaps others could chime in. If they are only going to put you through a battery of tests but not later be in a position to provide consults with your physician, then I would choose Dr. Grubb.

Have you looked into the Mayo Clinic at Jacksonville. There is a cardiologist there who is very interested in POTS. He is fairly new to the staff.

Lois

Link to comment
Share on other sites

Hi,

My own personal experience was negative at Vanderbilt. It was a total loss of time and money.

I had a very positive experience with Dr Grubb every time I went to see him. So my suggestion is to go see him first.

Link to comment
Share on other sites

Thank you everyone for your replies and advice. It is greatly appreciated.

Flop and Madeline, I'm sorry that both of you are in a similar predicament. I hope that you can both find helpful doctors and a good direction to go with treatment.

Lois, I've never been to the Mayo Clinic in Jacksonville. My doctor told me that it would be better for me to go to Mayo in MN. I didn't ask why. Maybe he didn't know there was a new cardio there with an interest in POTS. Or perhaps my dysautonomia is too severe and he thinks it needs to be evaluated by those at the main clinic.

Has anyone here been to the clinic in Jacksonville? What was your experience like? For those who have been to Mayo in Minnesota, was the trip worthwile?

Wherever I choose to go for further testing and treatment, I'll have to travel. So I just want to make sure that the travel, time, money, and energy is worth it.

Thanks for your help!

Rachel

Link to comment
Share on other sites

Hi Rachel,

I've only been to Mayo (MN) and would recommend it as a great place for testing/investigation. If you think that you have something else in addition to POTS, they might be able to help you figure that out. You may also want to read through some of the old posts, beacuse people here seem to have had mixed experiences both with Mayo and Vanderbilt, wheras the posts re: Dr. Grubb always seem to be really positive - but I think he is more for follow up care rather than testing. It might be helpful to try more than one of these options if you can manage it. Good luck and let us know what you decide!

-Rita

Link to comment
Share on other sites

okay...it's a bit long in coming but as promised i'm finally back to add my more thorough thoughts/ reply.

just as a bit of a warning of sorts that i'm going to try to keep my ramblings rather detached &/or past tense b/c some of these issues indirectly bring up some tough stuff going on with me/ my health situation at the moment which i don't want to end up getting into here. just mentioning it so that you'll know why if i sound a bit more distanced than my norm...aka it's not b/c i'm not trying to give a heartfelt response!

so with that cryptic intro, here goes...

for a bit of background for those who don't know, over the past ten years i've seen numerous autonomic specialists throughout the country...some b/c of where i've lived at the time (those i've seen in ohio or maryland) & others b/c i've travelled specifically for that purpose. the only "big name" place in the autonomic world that i haven't had direct contact with is mayo, though some of my docs have talked with docs there about me at times. but i definitely haven't just "doctor hopped" either as my current PCP & primary autonomic specialist are the same now as ten years ago & have been involved to some degree all along the way. one autonomic neurologist that i saw last year told me that i've probably seen more of the autonomic society members (doctors) than anyone else he's seen & more than one doc has told me that the docs i've seen have discussed me at conferences (i genuinely don't mind, but that fits into HIPPA how?! :) ). not sure that's an "accomplishment" i'm glad to have but ah well. healthwise i'm "beyond the beyond" such that the specialists all acknowledge they've seen less than a handful of people with my degree of systemic dysfunction, especially for someone my age. my working diagnosis isn't POTS but rather progressive autonomic neuropathy &/or autonomic failure, though at times over the years i was diagnosed with NCS &/or POTS and was a bit more "typical" within the atypical world of dysautonomia. all the docs now agree that i've tried everything there is for me to try...from the typical stuff to atypical to experimental and then some. GI wise there MAY be some things to play with but not as far as what exists right now there isn't anything left systemically. so that's the VERY condensed of the lens with which my thoughts/ experiences are seen.

because dr. grubb & dr. biaggioni have been mentioned/ asked about in particular I'll keep my thoughts more focused on them at the moment, but as an FYI i'll add that the other autonomic specialisits i've seen/ worked with to varying degrees over the years include dr. khurana (union memorial in baltimore, md), dr. rowe (johns hopkins in baltimore, md), dr. calkins (johns hopkins in baltimore, md), dr. shields (cleveland clinic in cleveland, oh), dr. chelimsky (university hospitals in cleveland, oh), & dr. raj (vanderbilt in nashville, tn). i may be forgetting someone/ someplace else along the way as well but that definitely paints the picture.

different people do have different experiences with different docs, aka some have had great experiences at the same places others have lived personal nightmares. at different points in time i have benefited some - though to varying degrees - from all of the autonomic docs i've seen. i've had many nightmares of my own but they haven't been with autonomic specialists. the different doctors/ institutions are very different though so while it may not be a matter of one being better or worse than another, in my experience they are far from equal or the same.

my experience with dr. biaggioni was only as a research patient so that likely differs some from seeing him in the outpatient clinic. i was inpatient at vanderbilt for two weeks and he was the attending during the month i was there so was the doc i had the most interaction with during my stay (which amounted to meeting with him probably 7-9 times in all). i have heard that some who go to vandy for an outpatient appt/ eval are asked to stay right then & there for inpatient research. for a LOT of details on my stay at vanderbilt a search for "vanderbilt chronicles" will tell you more than you want to know. obviously some things may be a bit different now but from what i've heard the basics are much the same. all in all i had a good experience & am glad i went. but what i did not write about much at the time though (though have in other posts since) is that my biggest disappointment with vanderbilt was the lack of follow-up. i wouldn't have had an issue with this if they had been upfront about it, but they indicated directly that they would be very involved with follow-up and initiated some things that without some degree of "handing off" no other doc could take over. so that was more than a little frustrating and something i just like to give people a heads up about. research or no research though i think dr. biaggioni and vanderbilt in general tend to be a bit more "in the box" as far as their thinking about testing, treatments, etc. for instance they have less of a tendency to support someone trying a treatment that hasn't been shown to have some success in an actual research study of people with similar test results. i certainly don't think that all patients should try anything & everything without basis, but from my experience & that of others i've spoken with i think they are more likely to want a lot more evidence re: definite success than some other autonomic docs i've worked with over the years (who are also interested in research but seem a bit more open to extrapolating a bit). i did have more testing at vandy that i'd had elsewhere at that point and for me that was a good thing at that point in time.

i've actually seen dr. grubb to varying degrees for ten years now. he's a great doc and a wonderful person but i do get worried at times that on this forum & elsewhere he gets placed on a pedestal of sorts that no doctor can really live up to, especially in the realm of something that is still as uncharted as dysautonomia. of all the doctors i've seen i think he probably has one of the most comprehensive/ holistic views of autonomic dysfunction in terms of viewing it beyond "just" his own training (cardio/ EP). while he is more than well versed on the latest research (and at times has been involved with it himself) he doesn't take it as THE final word in that he seems to have an appreciation for the fact that there is still just as much not known as there is that is known in terms of symptoms, treatments, etc. of all the docs i've seen i would give him the award of being the best "tweeker" of medications, i.e. playing with different combinations, dosages, etc. but with all of that said i will also be honest that the reality of good follow-up with dr. grubb and/ or his office is NOT something that happens readily either, especially for those who are not local (as follow up appts are pretty available with his nurse practitioner which can help with follow-up for those who are local). in theory i think dr. grubb would love to do comprehensive follow-up with each and every person he sees but it's just not possible. he sees too many people and in terms of numbers & hours in a day he probably shouldn't be accepting new patients. he spends a lot of time with people but the waits are often horrendous and in my opinion really inexcusable. there are times that his exhaustion shows through and that he's not as "on". regarding testing he generally goes off of whatever people have already had done. i actually don't think he sees people anymore without some type of autonomic diagnosis already, though don't quote me on that. the only autonomic testing available at his hospital (university of toledo medical center, though to confuse us all it's also been known as medical university of ohio & medical college of ohio over the past few years) is standard tilt table testing.

so...i'm not sure where that will leave you. perhaps more confused than ever? all in all i think i'd lean toward dr. grubb but the fact that i've known him over time as well as some other factors may impact my "vote". and i definitely wouldn't tell anyone not to go to vanderbilt and/or see dr. biaggioni. both places/ doctors have their advantages & disadvantages and as far as where to start i don't think i'd disregard the distance/ difficulty in getting there. and unfortunately i don't feel able to confidently say that either will be able to reliably consult with your local docs...doesn't mean it can't/ won't happen, but just that it's not a certainty for various reasons.

if anyone has more specific questions about experiences with docs feel free to PM me. i can't promise i'll be able to reply immediately but short of a medical crisis i will reply.

hope this helps a bit. i know the decisions aren't easy to make.

B) melissa

Link to comment
Share on other sites

I would like to re-emphasize my point. Unless you have a primary care doctor comfortable in continuing to treat you following another doctor's orders who is out-of-state, it's a moot point. The Mayo Clinic Rochester provides limited to no follow-up care. They do the gamut of dysautonomia testing, talk to you about the results, and prepare a detailed letter to your doctor with their recommendations. A major problem for me with Rochester relates to the uncertainty of when they can get you appointments with other specialists outside their discipline. For example, the neurology dept. could get me into to seeing a cardiologist 2 weeks past when I was scheduled to leave MN. Pretty hard to stick around another 2 weeks at least.

If you already had had the Tilt, the 2 sweat tests, etc and it is confirmed you have POTS, I would see Dr. Grubb. However, when you can see him once or twice a year, your treating PCP has to be willing to let you continue with his medications. It is hard for a doctor 900 miles away to treat you throughout the year.

It seems like your doctor already has a pretty good understanding of dysautonomia. Do you know if he read Dr. Grubb's article that included a chart showing the various medications used to treat POTS along with their pros and cons? If so, he may be able to work quite well without seeing Dr. Grubb.

Finally, not to be the pessimist (which I tend to me), there is no magic cure; no magic pill; no magic want...that will alleviate all your symtoms. Some may work for a time; some only in combination with another, and some are ok but the dosages need to be tweaked.

I don't think I remember see a list of meds you take or have tried. You might want to refer yourself to Dr. Grubb's article to see if there are any that you haven't tried.

I have seen doctors at both Mayo Rochester and Mayo Jacksonville as well as Drs. Grubb and Khurana. The docs at Mayo recommend different drugs that Dr. Grubb and others. The Mayo docs are not in favor of using DDAVP, IV saline infusions, and certain drugs to treat POTS and migraines. They did not seem to really think outside the box. The Mayo is generally great at diagnosing but how can you really expect that to serve as you doctors on a regular basis.

If you want a doctor to confirm your diagnosis, then by all means go to the Mayo.

At the end of the day, it is a decision you will have to make.

Good luck,

Lois

Link to comment
Share on other sites

just a quick late-night-but-i-can't-sleep "yes" to lois' comment(s) re: having a doc at home that's willing to take a lot on in terms of the day to day. to varying degrees i've had this for most of my "autonomic journey". while i wouldn't say that it makes things "easy", things were infinitely more difficult and/or near impossible during the few months that i didn't have this...and even then i had a back-up doc who understands autonomic dysfunction & was willing to pinch hit if i was really desparate. while the specialists can certainly be helpful, at the end of the day if i had to pick the most important doc it would be a great PCP. this can be an internist or family practitioner or even a good nurse practitioner (with a supportive doc alongside); this person doesn't have to be an expert but needs to be open-minded & willing to learn.

:) melissa

Link to comment
Share on other sites

Hi Rachel!

I'm so sorry you are stuck in this boat. I've "been there, done that" and to some degree, remain there.

Based on my experiences with the various places, your current location etc. here is what I say:

1-Don't waste your time with Mayo in Jacksonville. It's not that you would get no help (although you might not) but if you saw the cardio I recommended in Georgia he knows just as much if not more than the Dr's in Jacksonville AND Jacksonville does not have the equip. to do much of the testing you could best benefit from.

2-If you need the more sophisticated testing and want to rule out some root causes (i.e--sweat test, q-sart and other autonomic testing) then aim for Mayo in Rochester or Vanderbilt with the understanding there will be little follow up.

3-If you are looking for the right combo of medications then the inpatient research study at Vanderbilt is probably the way to go because they really do aim to find the med combo that they think will work for YOU and it's based in part, on your medical records and their autonomic testing.

I have had very good experiences with Vanderbilt and they have been most apt to follow up, return calls and emails to my Dr's etc. Especially being in GA this may be the case for you because you are reasonably close and they have a working relationship with the Cardio in Atlanta already.

4-If you don't qualify as a research patient and you've already had all the fancy tests then I don't know that I would spend the time and money going anywhere because although Dr. Grubb and the others are nice and could offer emotional support, the reality is that you probably won't get any more answers than you've already gotten and you may be more disappointed and more financially drained then anything else.

Hope this helps in some way and please do keep us posted.

Feel free to PM me if you want more specifics on my experience, specific Dr's seen etc.

Link to comment
Share on other sites

Just wanted to say that the Mayo Jacksonville does do the QVart testing, sweat test, etc.

There is a new EP specialist who is very much interested in POTS. He actually is trying to get Mayo to set up a POTS clinic.

I wouldn't rule them out.

If you have never had all the autonomic testing, then go to Vanderbilt. If you can participate in their research at no cost to you, then it seems to be a no-brainer.

Of course, at the end of the day, it's your doctor at home that bears the burden of treating you. It is essential that your primary doctor have the willingness to go down uncharted waters with you. Also, your primary doctor has to feel comfortable treating you using the drugs someone else has prescribed, especially if that specific drug is not used for the purpose it is being described.

If you have already had the autonomic testing, then I would recommend Dr. Grubb. I think the emotional support coupled with the knowledge base helps affirm that you are not crazy.

Good luck in your decision.

Link to comment
Share on other sites

Goldicedance,

I just wanted to say that the "q-sart/sweat test" that Jacksonville Mayo clinic does is NOT the same one that Mayo in Rochester does. Not only that, but they (Jacksonville) measures something different than the other clinics.

I wasted my time and money in Jacksonville and in the end THEY had to refer me to their Rochester, MN clinic because they said they did not have all the equipment and testing that the "home base" had.

Link to comment
Share on other sites

I had theQSART done in both Rochester and Jacksonville. And, they were the same. The Jacksonville test I had was done in 4/07. Perhaps when you went they did not have the autonomic lab functioning.

Moreover, a cardiologist has joined the staff who is very interested in POTS. I was not too impressed with the neurology department, though.

At the end of the day, you, Rachel, will need too make your decision.

Lois

Link to comment
Share on other sites

i'm guessing that the distinction with testing is that the sweat test OTHER than the QSART is only done at Mayo Rochester, aka the "shake & bake" where you get covered with powder and stuck in an oven :) i'm guessing this b/c it's a very labor & equipment intensive test that isn't done many places & i know that rochester does it, or at least did at one point in time. vanderbilt used to but no longer does due to cost. i had it done in maryland and they were happy i had it in my records. it's a test that can help "paint a picture" in correlation with others, provides helpful info, etc. but personally it's not something i'd list high on determining where to go.

B) melissa

Link to comment
Share on other sites

Thank you so much everyone for your replies! Wow, I turned my head for a moment and all of a sudden a book appeared on here! :) I appreciate all of you taking the time to help me figure out what to do next! It is so confusing and complicated, especially since we probably won't even be living in the same state 6 months from now.

I have been to Johns Hopkins before, but that was 10 years ago. I saw a neurologist up there who was doing some research on POTS and autonomic dysfunction. I participated in some research as well as had an appointment with the doctor. We got as far as we could at that point in time. Over the past 10 years my health improved to a function level, but then 7 years ago started to slowly get worse again. I?ve been disabled for about 3 years now, and while I hold no grand hopes of being cured, I do want to find some more answers if they are available.

My current doctors don?t know what else to try. There are some medicines that may be beneficial to me, but they want me to first be evaluated by someone more specialized than they.

I would (kind of!) like to have more tests done if Dr. Grubb or another specialist thinks it is necessary. I?ve had POTS for at least 12 years, but probably for most of my life. For the past 3 years, though, my symptoms have gotten so severe that we?re wondering if there is something else going on. Perhaps tests that can?t be done locally would show something else going on.

I would like to pick the brain of a specialist just to make sure there?s nothing we?re missing/nothing else I need to be doing. I want to get to the end of the road and find the answers that can be found. I will be content with my life and my health even if it stays the same, I just want to know if there is something else going on.

If there is nothing else that can be done to help me, then it would be nice to be able to tell people that I have been to the best doctors around and that they can?t do anything. It is draining to have people tell me to just ?Go to the doctor. There?s got to be something they can do.? I explain that I have been to numerous doctors and specialists and have had many tests run; I?ve tried every medication I can try at this point, but you can?t just simply fix a dysfunctional autonomic nervous system. Hopefully after going as far as I can possibly go then people will be more willing to accept that there isn?t much that can be done. I don?t like being hassled with all of this!!! I?ve accepted it, why can?t everyone else?!!!! They don?t even have to live with it!

Okay, enough of my rambling.

Melissa,

Thank you for your thorough reply! It is very helpful. I did check out the ?Vanderbilt Chronicles? and it helped to answer some questions. I?m sorry you?ve had to go through all that you have in the past years, but I?m grateful to you for sharing your experiences and wisdom with us all.

Lois,

Thanks for the help and advice. My current doctors would be comfortable in treating me and following a doctors orders from out-of-state. The problem, though, is that I probably won?t be in GA six months from now (which is when I?ll actually be able to get in to see Dr. Grubb or Dr. Biaggioni). So who knows who my local docs will be at that point!

Yes, I am well aware that there is no magic cure. I?ve actually never found a med that helps me feel better. And I?ve tried a lot! The midodrine keeps the blood from pooling quite so much, but it really doesn?t help me feel any better overall. It just keeps my legs from hurting so much due to blood pooling. So I?m not looking for a cure, or even great treatment. I just want to get the answers I can and move on.

Poohbear,

Thanks for the advice and for sharing your perspective.

Yep, I?ve seen the ep that you recommended here in Atlanta. I?ve actually only been to him once, though. He looked at my records and said, ?You?ve got to go to Dr. Grubb. You?ve already tried everything I can do.? I was very satisfied with the appointment, though. The doctor recognized that I had done a lot of research and knew that I knew what I was talking about. It is nice to be validated like that! My other POTS doc (an internal med doctor whose wife is disabled from dysautonomia too) has been telling me that I need to go elsewhere also. Not that they don?t want to treat me, it?s just that the severity of my symptoms is out of their league.

I have two more questions for Sunfish or any others who have participated in Vanderbilt research studies:

1. Do you have to be able to make it through the whole 4 hours to do med trials? I don?t think I can sit with my feet on the floor for 4 hours. I would get too nauseated, weak, and faint. When I go to church I have to bring a semi-reclining camping chair and a foot stool, otherwise I can?t make it through the service, which is only a little over an hour.

2. Are you given your medical records from the research studies, or is that information withheld? I would hate to go through all of that and then not be able to get my records or have them sent to my doctor.

Well, now I have written my own book, so I better be going!

Rachel

Link to comment
Share on other sites

hiya rachel -

glad that the info/ thoughts (or at least some of it) was helpful. i'll add a disclaimer though that i take no responsibility for your final decision :) not wanting to sound negative (and trying to give a laugh perhaps) but i'm 100% confident that it is entirely possible to have a bad experience anywhere! but with that said...

as an irrelevant sidenote, i was probably living in baltimore when you were at hopkins 10 yrs back. if not i was on my way :)

i'll add to my comments about dr. grubb that he tends to focus on treating symptoms rather than searching for a cause. he doesn't dismiss/ ignore the possibility of pinpointing a cause as it can help direct treatment (&/or can just be nice to know!) but since it's an unknown for more people than not he doesn't dwell on it or delve into it to the degree as some other docs i've seen. regarding your being interested in further testing though dr. grubb's hospital/ facility doesn't currently have capabilities beyond a tilt table test (as far as specific autonomic testing).

i will also warn you though that people will NEVER stop asking/ telling you to go somewhere else, see someone with more expertise, etc. your doctors may "get it" but you'll likely still get the unsolicited comments b/c most people don't want to and/ or don't seem to able to understand that some things don't have easy fixes. i won't bore you with my many stories of "well-intentioned" advise from everyone from strangers to even people on this forum, but don't get your hopes up too high about that coming to a halt anytime soon :)

to answer your two questions though...

1. the med trials are just that..trials. they aren't keen on you stopping just b/c you don't feel well b/c it sort of negates the point. but if you absolutely can't continue, i.e. you lose consciousness (as i did at one point) you can stop. they can't force you to do anything. i pushed my discomfort to a pretty high level & thus was incredibly out of it during the testing but i made it longer than i had thought i'd be able. it is a lot different though than, to use your example, sitting through a church service, b/c you're not out in public where you have to be at least somewhat "with it" but are in a healthcare setting without external stimuli/ interaction. so if you're willing to put up with the discomfort for the sake of learning more about your body &/or research &/or specific meds you might be surprised. and they will allow "compromises" too, i.e. if you need to wiggle around or put your feet up for a few minutes in order to be able to keep going they make a note of it & are okay with that. i had to do that A LOT (which if it helps you last a bit longer is probably preferred to having to stop outright.)

2. you don't get all of the nitty gritty details of the minute by minute monitoring (though anticipating this i actually wrote a lot of it down &/or had my mom do it when i wasn't able) that is a part of the research. but you do get an overall report, testing results much like you'd get elsewhere, etc. technically i think you are entitled to anything that isn't purely experimental research. but theoretically getting copies of things and actually getting copies of things are two different issues. i'd heard of someone else having trouble obtaining records after leaving so insisted on mine before i left vanderbilt. i'm glad that i did b/c they contained some errors which i was then able to have corrected (though not without a good deal of headache in the process). they did also fax them to my primary care doc at the time, but i'm a big advocate of always having a copy of important things myself as well.

hope this helps,

B) melissa

Link to comment
Share on other sites

Rachel,

In terms of the EP in GA...yeah...I was in the same boat---they didn't know what more to do for me themselves but they did facilitate my getting in with Vandy, Mayo Clinic's etc etc. AND they were willing to follow the treatment plan and call for help when they needed it.

It got to where the EP would say, "You've tried everything I know so what do you want to try next?" and then they'd write for whatever we all agreed on.

At Vanderbilt--in terms of the research study. At times getting through the four hours is difficult. You have the rest of the day to recover though and as Melissa pointed out...if you get too sick (pass out etc) then that usually warrants stopping that particular study. It's research but you always have the right to refuse and withdraw from the study at any time.

As for the records, I got most of mine before leaving there. They don't always share everything with you but they share most of it and they do give you the summary of which meds were used on which days and limited info on how your body responded to each med.

If you go for the med trials I would recommend keeping your own journal about how you felt, what your symptoms were etc. In my case for example, I had a good heart rate response to one drug but the side effects were awful. So even though they recommended the drug to control heart rate it didn't work for me because the side effects were bad and in fact, I ended up being allergic (which we didn't find out until I had a higher regular dose) so then we went on to option #2.

Sounds like you have a lot up in the air on top of trying to make another move. You may find that once you do go to a specialist and have their records that your local Dr's are more willing to follow their treatment plan regardless of where you live. When I was in Georgia nobody really knew how to treat me but they were usually willing to follow the specilists outline and I certainly didnt have as much grief about whether I had a correct diagnosis once I went to the "top specialists" (which in some ways is sad because even the "top places" don't always get things right for every person).

I hope you are able to come to whatever decision is best for you and to be at peace with it.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...