So what do Doctors do with this?

[StandUpSitDown]

So what do doctors do withresearch like this?

It sounds interesting, can match my symptoms, but do doctors in regular practice try this, or wait years for other results?

Also, I see so many people refer to Dr. Grubb. Sounds like a great person, but a highly over-sought one.

What about the doctors at Mayo or Vanderbilt, or UCLA? I see them referenced as doing work in research (especially the first two). Do they take patients.

I am new to this, and have a doctor who is understanding, wants to do the right thing and is doing reading on this, but my doctor doesn't treat this regularly .So, this doctor is 'exploring' this - quite competently I feel, as this doctor is brilliant, but at times I wish I could see a doctor who has dealt with this before (no discredit to this person again, and compared to some stories I see here of doctors who refuse to deal with this, I feel blessed.) But I'd love to hear thoughts on this. My symptoms come and go. At best, it's like nothing's wrong. At worst, I am in bed. All started last year, at age 43. I sure was sick with everything under the sun for the past year, so doc is guessing viral vs. genetic, partially due to age of onset and gender (male).

I also have constant chest pain... and the other thing we are looking at - and this pain has existed slightly for years, but it getting worse about the same time as all of this - it's a pain that hurts like heck standing up, and also, when flaring up, I can feel it hurt when my wife brakes suddenly in the car just for a second even - so it seems to be a pain that is related to pressure from something resting on something else. We'll see if this has any causal relationship to the POTS - like all of you - this is a journey of discovery for me. I have had tons of cardiac tests past 6 months - EKG, stress echo, stress sestamibi, chest CT scan for calcium - all look fine. So I really don't think my heart is clogged with pain.

So I guess my question is:

1) Are there excellent places to look into this vs. just Dr. Grubb?

2) What do you typically see done with this research like the one I mentioned. I mean, I for one would love to see how I feel after a week on these...

3) Anyone else have this CONSTANT chest pain? I mean, it sure seems that when that pain isn't there at all, that I am feeling ok.

Sorry to be so rambly. But I think people on this forum will know where I am coming from.

[Poohbear]

I'm sorry you are having to deal with this!

There are other options aside from Dr. Grubb and though I've never been to him myself I've been told he doesn't do testing anyway. My personal opinion, since this is the case with him, is you are better off going to someone who does testing. Get the "official" diagnosis, rule other conditions out first that could be causing or aggravating your condition and then move forward from there.

Where are you located? Are you in the U.S.? If so, what part or what state?

I think the general consensus is that it's harder to find Dr's if you are on the west coast.

I have been to both Mayo Clinic in Jacksonville, FL and Mayo in Minnesota. My personal experience was that the Autonomic Specialists in Jacksonville were more helpful. But, I got more out of Cardiology in MN. There were pro's and con's to both and in the end I got lots of answers about what my body was and was not doing and they ruled out LOTS of things that a "Average" Dr either can't rule out (because they don't have the special tools, equipment) or don't know to rule out.

You may want to check out this site as well http://www.mc.vanderbilt.edu/root/vumc.php?site=adc. Vanderbilt has recently been doing research and they are currently taking people. Talk with you Dr and see if maybe you qualify for inpatient or outpatient referal there.

You mentioned the pain...is that you main symptom or do you have others? What meds have you tried so far?

[Sunfish]

hi, and welcome to the site. i'm sorry to hear that you've been having problems but glad to hear you have a good doc. i totally understand how you would want to see someone who has more experience, but short of that having an openminded/understanding/competent doc is a good start. and as you may have noticed from reading, many of the specialists are not so good with follow-up care, so even if you do see someone else at some point it will still be great to have your doc as a day to day advocate & point person.

first, has your doc diagnosed you with POTS &/or dysautonomia? have you had a tilt table test. while the symptoms you describe can fit this they can be b/c of many other things as well. if you haven't had a tilt table test you may want to bring this up with your doc. it's not foolproof but is generally considered the diagnostic standard for OI/POTS/NCS. it's great though that you've had all the testing you have; while it's frustrating to not have answers it's also good to know that certain things are okay. sort of a catch-22.

regarding the research study you referenced & asked about, it was done at vanderbilt & while i'm not certain if i was there "in time" to be included in the data for the specific publication, i was actually a research patient there for several studies, including the medication mentioned in the study. the name brand of the study medication is mestinon and has been discussed on several occasions on the site so you may want to do a search (search button is in the upper right hand portion of the screen). there are people who have tried mestinon aside from research studies so while it may not be the first thing tried by a doc, there are a good number who aren't waiting years to give it a try. b/c it's not a new med there's no need to wait for FDA approval, etc. it's a fairly new med for use in dysautonomias but has been used for years for myasthenia gravis so can be readily prescribed now. (if it were a new med entirely you're right in that it might not be available outside of research for several years.) as anything, it doesn't work for everyone but has been helpful for some. for me it has been helpful in conjunction with other meds but did not help me on its own. if you want to read more (a lot actually!) about my research experience at vanderbilt you can find it at:

http://dinet.ipbhost.com/index.php?showtop...bilt+chronicles

i agree fully with your assessment of dr. grubb. he's great but WAY overworked. he was my original doc b/c i lived 5 minutes from him & his wife was my pediatrician but i have seen many others over the years (for various reasons, largely b/c i moved 500 miles away). as great as he's been for many, there are other options to explore; i wouldn't want anyone to limit him/herself to any one "best" option as we've all had different experiences. and pooh is right that some places/docs focus on testing, some on treatment, etc....

the docs at vanderbilt & at mayo do see some patients outside of research but it varies as to the requirements for this to occur, what testing they will do, how the process works, how long the wait is, etc. and in my understanding it sometimes changes over time so i'd say the best thing to do is make phone calls. you can check out the doctor list on the site at http://www.dinet.org/physicians.htm and if you let us know what area of the country you're in others may have other suggestions as well.

others will likely have more to say about the chest pain. i have it intermittantly when i have bradycardic &/or hypertensive episodes but it's not a constant thing for me. some others have it more often.

good luck as you continue your journey. there's a lot of good info on the site so keep exploring (as i can see you've already been doing) & asking questions.

melissa

Edited August 31, 2005 by Sunfish

[hockeymom]

Poohbear and Sunfish,

Did you feel that the testing you had done at Mayo and Vandy were of benefit for you in the long run as far as helping to find the best medications for you based on testing results? I'm curious about that as my husband and I keep bouncing around the possibility of taking our daughter to Mayo for just that reason. She has a good doctor (out of state) but there has been almost no response to medications to date and she is quite debilitated. It seems we are ever in a state of trying to decide if there is anything more we can do to try to get a bit of relief for her.

We watched some of the videos from some of the talks from the NDRF conference in 2000. That got us to thinking on this topic once again. I have certainly heard repeatedly that followup is not a strong point of the research facilities. That in itself is not as much of an issue for us since we have a good physician for followup. However, we have wondered if some testing would be beneficial. I think Vandy only sees those 18 and over, so that would not be a possibility, but I've been mulling over the possibility of pursuing testing at Mayo. Of course, the ultimate question then is whether that would actually be of benefit. Of course no one has the magical answer to that question in any given situation, but I'm curious as to how you felt additional autonomic testing that can only be done at such centers has impacted your overall treatment. I'm speaking of the specialized autonomic testing beyond the tilt, i.e. testing that tries to identify the specific mechanisms behind your dysautonomia.

Would appreciate any input from you and others who have had such testing at places like Mayo and Vandy.

[steph37822]

oops

[Poohbear]

Hockeymom,

I certainly do not regret my travels to either Mayo Clinic. Having been to both clinics I can say that MY personal experience was I got more out of the Dr's in Jacksonville, FL than in MN and my overall experience was much nicer, much more quality time with the individual Dr's in Jacksonville and the staff was friendlier. On the flip side there was one test that Jacksonville no longer has the ability to do (the sweat test) so I had that done in MN and it did give some valuable info.

So far, I have tried every medication out there and have not gotten any relief. Either the meds don't work or I have side effects that make me worse instead of better. In the end, the Mayo clinics have not had any new ideas or suggestions. The benefit of going was that they were able to rule out some things that might have been causing my problem. Because of their knowledge, testing and equipment they were able to do much more than a "typical" Dr from a hometown. Though I left upset (because I badly wanted a "fix") it was SO helpful to know there were certain diseases/conditions that I did not have that had maybe caused this and it was so validating to have the labs, test results etc to "prove" just what and how messed up my body is (because not all of my Dr's really believed all that was going on until they saw Mayo's reports).

I agree with Steph, even though the follow-up is horrible there, one good thing about it is I have a lot less trouble with other physicians taking me seriously now.

I am currently set up to go to Vanderbilt in October for research. I do know they won't accept anyone under 18 for research but they do have an outpatient program as well and they may see her there.

In terms of cost, I've been really surprised at how well my insurance paid with Mayo. I've been twice to Jacksonville and once to MN and I haven't always had the same insurance. In fact, this year when I went I had Medicare and I was shocked at how much they covered!! I still had a bill that was about $1500 for my part. To me, the most stressful part of the expense is the traveling/hotel expense because you have to have that money up-front whereas Mayo will work out a payment plan with you.

Let us know what you decide

[hockeymom]

Poohbear and Steph,

Thank you so much for your thoughtful and helpful replies. It is such a quandry for us knowing what to do next or whether it's better to be patient and see if time helps to heal the worst of it. It seems that those who start as kids often do have a trend of having some significant recovery in time, and our doctor does feel that she has an excellent chance for a lot of recovery in the longer term. It is just very hard as parents to sit and watch your normally very athletic kid have trouble even standing upright for more than a few minutes - hard to accept that and not be ever searching for anything that might help return some of her quality of life in the shorter term while we wait for the longer term healing.

One good point that both of you made that I had not really thought about before is the validity it gives with other doctors to have a well-known clinic standing behind you on diagnosis. There is definitely a lot of value in that for the longer term. We are currently seeing a doctor out of state because of the lack of local expertise, but our hope is to eventually have a doctor here who can help follow her. We have most definitely experienced the same as all dysautonomia patients regarding the lack of knowledge, the doubting, etc. That in itself is such a huge problem!

Yes, we're well-acquainted with the difficulty in travel. It's another difficult piece of making a decision like this. Like you said, there's the issue of the expense and even worse than that is how very difficult the travel is on the patient. She abhors the thought of the next trip for followup with doctor.

Thank you so much for such thoughtful responses. We continue to ponder our options.