How Many "2nd" Opinions Has Everyone Had?

[cardiactec]

I am curious as to how many second, third, or fourth opionions everyone has gotten regarding their diagnoses/or lack thereof depending on how you look at it! )

I went out to mayo in rochester in march 2006 and am considering going to see dr.grubb at some point this spring. i'm not sure if i should waste my time going to see him if i have already been out to the supposed "head hanchos" at amyo who deal with POTS as my supposed diagnosis. i believe i have a significantly different case than others, more complex, and perhaps a third opinion might help?

what do you all think? how many docs have you ventured out to see?

[JenniferInOhio]

Cardio #1 - diagnosed me with IST.

Diagnosed myself with POTS after researching for myself.

Cardio #2 - diagnosed me with POTS, although he thinks it is odd that I am not better after a year??

Cardio #3 (Fouad) - second opinion for POTS.

I'd say go see Dr. Grubb. From what I've read, he seems fantastic and might be able to help you, especially since you have a more complex case.

[Aprilmarie52]

I went to the ER 2 different times and they told me that I had a strep infection on my kidneys and a UTI. Not even close. I went to a different ER about 1 hr away and met my current cardio. He diagnosed me. If you dont feel like they have gotten it right yet, I say get another opinion. It cant hurt.

[kmpower]

6 trips to ER before tachycardia diagnosed instead of anxiety.

6 different cardiologists before paroxysmal tachycardia diagnosed instead of stress or panic attacks.

3 neurologists before orthostatic hypotension believed instead of "stress".

I am still looking for an internist after 4 have diagnosed something psychological when blood tests were good.

There is more, but it gets sort of embarrassing...

Keep going until you are satisfied that you have gotten the best the system can offer you. Create your own team if you have the resources.

OLL

[masumeh]

I saw doctor after doctor for about a year when I was first sick (4.5 yrs ago)...then I stopped bc I didn't get any answers from them. They just wore me out for nothing. It was an emotional rollercoaster and doctor visits were spending all ALL of my precious and rare energy. The best thing I did was get off that ride.

Total, I would estimate I saw about 40 doctors, including ERs, primary cares, specialists (endo, neuro, cardio, pulmo, hemo, etc.), homeopathic, etc. They were all fairly clueless. Well, no, to be fair my hemotologists are good solid doctors in their field, and they've helped me with my thrombophelia, but this is not related to POTS, I think. Also my pulmonologist did his best...but hey, it's not his field either.

Found POTS myself online three years after giving up on doctors and the whole search. I came across autonomic disorders in my biological psychology textbook and it sounded familiar. Otherwise, I had given up on modern medicine. But, my current doctor (found him through this site, THANKS, whoever made that list!) is really great and his office is full of POTS sufferers, the nurses and staff are patients too! He really truly understands what the disease feels like and so do the nurses. It's great! I recommend him, if you live near Virginia (Dr. Abdulla, he's on the dinet.org physician directory).

But I have a question: what do you want them to diagnose you with, if you already have the POTS determined?

[cardiactec]

POTS isnt really a diagnosis. it is a basis FOR or TOWARDS a diagnosis. like anything labelled a "syndrome", it is more or less a way for docs to say that yes, there is something wrong, but we dont necessarily have all the answers. a neuropathy would be a diagnosis of a cause of POTS, primary adrenal disease would be a diagnosis of the cause of POTS. etc etc.........

this is why i seek answers beyond a "pots diagnosis" because in all reality, it POTS really isnt a diagnosis, but just a way to say there is an underlying problem of some sort.

[stampingamy]

It has been interesting reading this. I must admit I understand how you are feeling cariactec, that POTS isn't for you a dx, but a list of symptoms. That is what a syndrome is - a copilation of various symptoms that go together and it is a diagnosis. For example - Down Syndrome, Rett Syndrome, Angelman Syndrome, I am an SLP in the special needs field and could list syndromes that are true diagnoses for a few paragraphs. I always have said that every year I get a client with a syndrome I have never heard of and need to research. This year it was mine - POTS.

A syndrome is a compilation of symptoms that when they always occur together becomes the diagnosis. Within any syndrome there is the range of experiencing the symptoms in varying degrees. People who have the syndrome may not have all the symptoms noted within the syndrome or may have symptoms that are not typically in the syndrome but have no other reason they have that symptom. Typically one needs to have a certain number of the symptoms to have the syndrome as the diagnosis or the syndrome has a major symptom or test result that must be present. For POTS, the TTT seems to be the definitive. Also from an insurance perspective it has a diagnostic code that makes it a diagnosis.

This is not to say you shouldn't seek 2nd opinions. But though this might help in understanding. I do wish it had a name other than POTS. I agree with others who have mentioned in other posts that it is hard to be taken seriously. But, that is for another string of posts.

Happy Holidays,

Amy

[desiree942]

It has been interesting reading this. I must admit I understand how you are feeling cariactec, that POTS isn't for you a dx, but a list of symptoms. That is what a syndrome is - a copilation of various symptoms that go together and it is a diagnosis. For example - Down Syndrome, Rett Syndrome, Angelman Syndrome, I am an SLP in the special needs field and could list syndromes that are true diagnoses for a few paragraphs. I always have said that every year I get a client with a syndrome I have never heard of and need to research. This year it was mine - POTS.

A syndrome is a compilation of symptoms that when they always occur together becomes the diagnosis. Within any syndrome there is the range of experiencing the symptoms in varying degrees. People who have the syndrome may not have all the symptoms noted within the syndrome or may have symptoms that are not typically in the syndrome but have no other reason they have that symptom. Typically one needs to have a certain number of the symptoms to have the syndrome as the diagnosis or the syndrome has a major symptom or test result that must be present. For POTS, the TTT seems to be the definitive. Also from an insurance perspective it has a diagnostic code that makes it a diagnosis.

This is not to say you shouldn't seek 2nd opinions. But though this might help in understanding. I do wish it had a name other than POTS. I agree with others who have mentioned in other posts that it is hard to be taken seriously. But, that is for another string of posts.

Happy Holidays,

Amy

I think I read an article in which Dr. grubb was quoted as saying by the time he gets a patient they've seen 11 drs. and not been properly diagnosed. I saw him last summer and it was worth the $$ b/c it put things in perspective and gave me hope. He has probably seen it ALL so he can best say if your symptoms are POTS and/or a secondary condition. There are a lot of disorders that co-exist with POTS. I will see him again in 2007. He doesn't have the magic pill but he will know what meds are best for YOU as an individual given your symptoms/history. I have improved a lot since seeing him, but I still have bad days like most of us...having a spell right now after doing well for many months! I spent a lot of time trying to find a local doctor and finally I realized the problem wasn't me (anxiety) it was THEM so I just waited the 9 months to see Grubb, well worth it.

[dizzygirl]

well i saw 20 years worth of specialists.. all telling me i was pretty much under "stress""

more docs then i can add up in my head..

however once i got diagnosed.. at age 20 ....that year i had been seen between ER visits and doc and specialists.. probably 15-20

as you can see in my signature i have alot more then just pots going on as well.. Im currently working with 3 cardiologist 2 being "POTS experts" Im going to see a neurologist and an neuro surgeon that are atleast familiar with pots.. as well as a gi and other docs..

I wish you luck in finding out what is going on

[Poohbear]

I don't want to discourage you from finding answers but I wanted to offer a couple of things that might help you decide what is best for you.

Of course, this is a personal decision and only you know what you need so this is just my opinion based on my experiences.

Mayo is very good at ruling out disorders that may be causing this syndrome. So, if they didn't find anything in your case that is the root cause then your "odds" lessen that anyone else will figure it out. That's not to say you aren't sick....only to say the researchers are still very limited on what they know but they do admit that there are probably hundreds of reasons why people get this syndrome.

You know the options to help control symptoms and hopefully you are trying those options and something will help.

My experience is that I have been seen by two mayo clinics, vanderbilt and countless other Dr's. I got a lot of good answers about what my body does and does not do but still no "real name" for the disorder and still no effective treatment.

I wouldn't change what I did at all but I was very aware that I was probably not going to get the answers I wanted.

If you have the time and money to pursue your answers then go for it but if it puts you in greater financial strain, family strain etc. then it's probably not worth at this point, your treatment options wouldn't change.

[Dawg Tired]

1) Family practice Dr who told me I was depressed and that's ALL.... refused to even refer me elsewhere.

2) Pulmonologist I got into thanks to the fact I worked with the wife of an anesthesiologist and he thought I needed HELP! (He said Orthostatic intoleranc and I needed a TTT)

3) EP who called me a "Princess on a Pea" and told me it was all in my head....

4) Neurologist (Doctor #1 was out to PROVE it was all in my head) he agreed with #1 that I was a nut case.

5) EP#1 had to do a TTT because the Pulmonologist pulled rank on her.

6) EP#2 who put in a pacemaker because I did not trust EP #1..... (TTT = NCS)

7) Trip to Vanderbilt. They could not help me but they Dx'd CFS besides the NMS.....

[nikigrl8883]

i had seen 6 doctors before i got diagnosed wit h pots and been to the ER about 10 times.... i dont know why i have pots...my hormones are ok nothing that would casue pots it seems ....suppodly i dont have lyme or anmeia...basically i haver no clue as to why i have it although i agree everyone should try to find the cause but some people cant unfortunatly

[MightyMouse]

Cardiactec, I just want to caution you that POTS or a similar moniker may be the only DIAGNOSIS some of our members get. It is a diagnosis; you may hold a different opinion of that issue, however, many "syndromes" are the final diagnosis for disorders who have etiologies that are still poorly understood by medicine. I want to be clear that for many members, it's hard to get folks to take their disorder seriously--insisting that POTS is not a diagnosis is simply unacceptable.

POTS certainly qualifies as a "condition", per the definition of "diagnosis" but not as a disease. Many folks will never find out the genesis of their POTS, but it is a recognized set of symptoms, hence, it's defined on NIH, Medline, etc., and has standard DIAGNOSTIC criteria. Please do not assume your ideas about your personal quest for answers for why YOU have autonomic problems are the same as others here. While many of us, myself included, saw multiple doctors before being told I had POTS, it was simply by sheer luck that I found out I had EDS III, my likely cause. Nonetheless, all my doctors accept POTS and NCS as my primary issues/diagnoses.

definition: diagnosis

http://dict.die.net/diagnosis/

Diagnosis \Di`ag*no"sis\, n.; pl. Diagnoses. [NL., fr. Gr. ?,

fr. ? to distinguish; dia` through, asunder + ? to know. See

Know.]

1. (Med.) The art or act of recognizing the presence of

disease from its signs or symptoms, and deciding as to its

character; also, the decision arrived at.

2. Scientific determination of any kind; the concise

description of characterization of a species.

3. Critical perception or scrutiny; judgment based on such

scrutiny; esp., perception of, or judgment concerning,

motives and character.

The quick eye for effects, the clear diagnosis of

men's minds, and the love of epigram. --Compton

Reade.

My diagnosis of his character proved correct. --J.

Payn.

Differential diagnosis (Med.), the determination of the

distinguishing characteristics as between two similar

diseases or conditions.

[Eillyre]

Cardiatec,

Cardiologist #1: diagnosed OI, began extensive testing to rule out various conditions

Cardiologist #2: re-checked extensive testing to rule out various conditions

Electrophysiologist#1: diagnosed POTS despite an ?inconclusive? TTT, suggested going to research center

Dr.Low: confirmed POTS diagnosis, as well as CFS, & suggested a treatment regimen

I received a preliminary diagnosis of POTS 6 months after my symptoms began, which was confirmed out at Mayo 6 months later. We still have no idea why I began having the symptoms in the first place ? I don?t know if we ever will.

When the treatment the first cardio suggested didn?t work, she recommended that I see one of her associates. He was just as stumped and sent me to UPenn. The electrophysiologist there diagnosed POTS, but didn?t know enough about it to treat me himself, so he suggested going to a research center. One of my dad?s colleagues (a neurology professor) researched the hospitals we were considering and told us to get Dr. Low if at all possible. Dr. Low started me on Mestinon and it has worked like a charm for my POTS symptoms. He said he would be happy to communicate with other researchers if I wanted another opinion regarding POTS or CFS, but didn?t think it really worthwhile (so little is known about either condition) ? my parents and I agreed with him.

As we had no ?root cause? to why the POTS & CFS symptoms began in the first place, we aimed at eliminating particular symptoms that were most disabling for me (trouble sleeping, brain fog, etc.) rather than looking for one treatment that solved them all. Mestinon eventually concluded the orthostatic & tachycardia troubles; Melatonin significantly reduced the sleep issue (which subsequently solved some of my lesser symptoms). We?re still working on addressing the brain fog.

As to whether or not you should seek additional opinions from medical professionals? I really think that?s a decision you have to make. If you?re not satisfied with the amount of information you have about your condition at present, then maybe it would be good for you to go to Dr. Grubb or someone else; sounds like you have a theory as to the cause of your POTS symptoms. If you don?t think they?ll shed any more light on the situation (which is certainly possible), maybe it would be better for you to save the money and put your energy into coming up with your own treatment plan. Only you can make that decision.

In my case, it was extremely doubtful that anyone would find the cause of my symptoms, so I decided to save the money and energy that trotting ?round to further researchers would cost. I?ve found targeting and solving specific pieces of the puzzle (with the help of my dad, PCP, and occasionally Dr. Low) a much more profitable route.

Best of luck!

Angela

[Rachel]

I've seen lots of doctors. My diagnoses along the way include:

1. exercised induced asthma

2. allergies

3. stress

4. "There is nothing wrong with you. You're making it up."

5. NCS

6. Vasodepressor Syndrome

7. Orthostatic Hypotension, severe near-syncope, and fatigue

8. Peripheral Dysautonomia and hypovolemia

9. Dysautonomia, Orthostatic Hypotension, and Sinus Tachycardia (This doctor had not heard of POTS yet).

10. Orthostatic Hypotension with compensatory Sinus Tachycardia

11. Orthostatic Hypotension and Inappropriate Tachycardia

12. POTS

It took a long time, but I was eventually diagnosed correctly. POTS has been confirmed many times. I'm still looking into some of the other things to see what is correct. There might be more than POTS, but further tests will be necessary. I was diagnosed 11 years ago when there wasn't as much known about dysautonomia and there was even more confusion in the terms (as evidenced in my last several diagnoses above!).

If you think you have been diagnosed incorrectly, and if you can afford to, you can keep studying and going to doctors until you get a diagnosis that fits. It is helpful to have a treatment plan that is as close to the true diagnosis as possible. But it is up to you and your doctors to decide if there is more going on that needs to be discovered, or if everything has been discovered as much as medical knowledge will allow.

Good luck.

Rachel

[cardiactec]

Rachel,

you hit the mark when you said "It is helpful to have a treatment plan that is as close to the true diagnosis as possible".

....as i have been saying, i believe there is a PRIMARY issue behind POTS, a more realistic and definitive diagnosis. there is an underlying issue, A PRIMARY CAUSE AND DIAGNOSIS (NO, NOT POTS) in ALL of us. some get definitive answers, while some of us have not - YET!.

i believe a treatment plan cannot be well established in someone who hasnt even had a well established diagnosis - this i believe is the reason why many people who suffer from a ''syndrome'' dont respond well to most meds, some might, but in my own personal experience, i have not - which leads me to conclude that there may be a different pathology going on with me, especially where my rates are pretty much out of ballpark in comparison to the "typical" potsy/dysautonomic rates AND my ekg morphology is very bizarre. another reason why people dont respond well to treatment due to a "syndrome" label is that a syndrome is just that - a collection of symptoms with not a very specific or completely understood pathologic etiology - docs cant properly treat what is not FIRST AND FOREMOST properly understood. fortunately there are those who have gotten answers to their postural tachycardia beyond just that, postural tachycardia -- and most would have better treatment plans because there is better insight into the disease state.

i believe there is a conduction defect element with me, not just some sort of autonomic dysfunction they call POTS. i have been refractory to most medications used to treat postural tachycardia with the underlying theory that "blood is pooling cuz of autnomic dysfunction" - well, all their beta agonists and vasopressor meds have done NOTHING to help slow my tachy rates - which suggests to me that pooling and dysauto is NOT the primary cause.

anyway, good insight. a proper diagnosis is key to helpful treatment in most cases.

[masumeh]

I think that eventually POTS diagnosis will have many, many subtypes. One nurse told me that POTS just entered diagnostic manuals in like 1994, so what can we expect in such short time? I believe MOST doctors practicing medicine in the US still don't know about POTS past a vague relationship to fainting upon standing (plz, let alone the rest of the world, wherein, statistically speaking, most POTS sufferers are suffering without any right clue as to the disease and probably everyone is calling them nuts or weak or otherwise gave up on their health).

But, back to the categories, we do, just in this forum alone, have so much variation, it probably goes beyond the origin (chiagri malformation or other congenital origins; accidents ie whiplash leading to nerve damage; viral infections sneakin up into the nerves; etc) and the main dysfunction (adrenal; blood volume; whatever). We are still all united under this umbrella of autonomic disorder, and many of us under the diagnosis of POTS. Whatever might come later in diagnostic subcategories, I don't think it's availible now.

And you know, that's really very typical. Think about "a cold"...how many types of "colds" are there, and it's all from different viruses, we just call it all a "cold" because nobody cares exactly which virus you have. Now, you want to treat the cold, you have to examine which symptoms are bothersome, stuffiness? muscle aches? migraine? vomiting? fever? Which do you have? Which do you not have? Think about Downs Syndrome...it's that chomosomal abnormality, but do you know how many different variations of the disorder there are? Soooo many. There are just certain key features that justify the umbrella diagnosis. But every case is bound to be different.

So, yeah, we are all different...but there are some key features that bind us together under one diagnosis, POTS. Like it or lump it, as my british sister-in-law sometimes says.

Hey, for those of you who are British, what does that mean anyway? I hope "lump it" is not some kind of cuss word, is it?

Anywho.... I think there's a touch of denial in your quest....some of us respond to meds, some of us have worse cases, more severe damage, or what not. It's kind of courageous that you want to keep fighting and challenging doctors for dx and rx that works to help you...but it also has a limit, I mean, a point where maybe that pill isn't out there because nerve damage can be .... well... You maybe just want to research for a while, but simultaneously learn to cope as much as you can as is.

Time can also improve things...

[kmpower]

I don't think the name is as important as the specific things wrong with the person. Advertising has made us think in terms of named problems and specific drugs for the named problems, but we know that health is a complex thing.

Since we each have our variations, causes, symptoms, etc., we need to individualize our approaches. You may only have one thing causing all your symptoms, but I had lots of contributing things.

Waiting for some final answer may be robbing you of relief. For me, from the beginning I learned that my homocysteine was high and magnesium was low, so I started with that. As I learned various things which I could address (exercise, compression stockings, etc.), I added them. All the while I was looking for doctors and getting tests.

Finding this site helped the most and I think it is because of all the differences people have. The various threads have given me clues and links which I can personalize for my own program. I am sure that is true for others. You just fix or get fixed what is possible along the way, even if is just relieving of some symptoms, and even if you continue to refine your search until you get the best answers medicine and technology can provide.

Best of luck in your personal program development.

[Tessa]

The number of doctors I have seen for my health problems is a shame. I lost the count!

I have been from one to another. Sometimes I gave up, others I tried again... But most of the times, it has been very difficult to reach someone who really wants to help and knows what he/she is doing.

Regarding POTS, I still have not found a cardiologist. I have dx myself with POTS after a long investigation on the Net and thanks to DINET (thank you for this website and forum!).

I am waiting for an appt. with another cardiologist, though who knows if he will be able to help?

Not many deal with POTS, they haven?t even listened the word POTS. They studied that fainting = vasovagal syncope, nothing to worry about, nothing serious that fades out when you are older and that you can avoid by drinking plenty of water and avoiding getting up too quick... The new information regarding POTS, dysautonomia, etc. is unkown for them.

But I still have faith and I am looking forward to my appt.

Take care,

Love,

Tessa

[Guest tearose]

I stopped counting years ago!

I'm guessing I have seen over 100 different doctors in the years since 1991 when this journey's largest problem surfaced.

I am more choosey now. I meet a doctor and if they are good I'll add them to the "team" if not, I look further.

I think it is different for each person based upon what all the symptoms and issues each person has.

more things have developed since my symptoms first appeared so I will be returning to the Mayo clinic to see if there are any further insights into my dysautonomia and whether or not it is progressing or now showing other changes. It has been five years since my last complete full ANS workup. It has been 16 years since I was first seen at Mayo...now we will see how my body is changed over the years and I believe that at some point we will be able to "connect some of the dots" after this passage of time.

...I keep hoping...

[Lukkychrm42]

If you think there's something else going on, it might be worth pursuing. Such as checking out the possibility of this conduction defect.

But POTS is a condition- I often refer to it as dysautonomia to clarify that there's more going on than just the POT, but there are a lot of people here for whom POTS as it is diagnosed IS primary. It's true that there's definitely a long way to go in the science, and in some generations, there may be different names for different types. My EDS was diagnosed coincidentally, too, and I am treated as a POTS patient. My medications are to treat the symptoms of POTS.. which reaches the logical conclusion of their treating POTS as it IS a syndrome. That's another reason to call it dysautonomia. While there may be an underlying cause, and it may be very important to find it, there's no guarantee that treating the underlying cause will cure the POTS. I'm afraid you might be expecting answers that we may not know for another 50 years.

That being said, I think it might be very helpful for you to see a specialist. Dr. G. for example is an electrophysiologist, and maybe between an electrophysiologist and a neurologist, you could, get some more definitive answers.

As to the primary versus secondary problem, as far as treating the POTS symptoms, I don't think it really matters unless you determine that there IS a specific problem such as hyperadrenergic or baroflex receptor or other more difficult to name issues- because the severity of the POTS symptoms can be as debilitating for either. Therefore the treatment of those particular symptoms can be as helpful to one as to the other. And finding the right med. combo is a process. And a specialist will know more about how to treat things beyond just the POT bit.

POTS is a well-established diagnosis, especially considering it's only been around as such for 13 years. It may not be well-understood or well-known, but there's an awful lot of scientific data out there to back it up.

In my opinion, a person who suffers from a "syndrome" might not respond to certain meds because: they're being treated for symptoms common to the diagnosis but not necessarily appropriate to the person, or because there's simply not enough out there to inform us of different kinds of medicine. This is one reason that going to a specialist might help.

Don't forget- the only thing that is normal in POTS is that there IS no norm. No 2 of us have identical cases. I'm sorry if this frustrates you. Most illnesses are not completely understood- treatments that cure one person do nothing for the next, genes continue to mutate, and most people try several types of medicine for various conditions (infections, high cholesterol, asthma..) before finding one that helps more than the others.

[calypso]

I saw like eight or nine doctors in the first six months of POTS b/c no one knew what was going on. The cardiology doc I saw the first time I went to the ER suggested POTS but b/c it was an ER visit, it wasn't given any weight and the follow-up cardio I saw later that week dismissed that b/c my BP was high, not low, and he claims he never sees POTS patients with high BP. (However, I had just had a baby two weeks prior and had preeclampsia, so normally my BP is pretty normal or low.)

Anyway, I then saw my primary doc, then these ones in this order: OB/GYN, a neurologist, an endocrinologist, a rheumatologist, another rheumatologist (but this time one who specializes in CFS and other weird disorders of the mind and body), an immunologist, and I can't remember who else. I also saw a Traditional Chinese Medicine doc, plus a naturopath, somewhere in there.

I completely gave up on a diagnosis about 2 years into my illness. And now that I have accepted that, I feel like I function better. I don't know if the not knowing was stressing me out or what, or maybe all the doctor visits or the money spent on them. But I figure until there's a cure for POTS, what the heck does it matter?!

That's just my two cents' worth.

Amy

[the_dancer_grl]

i lost count hehe, I think only 3 or four of the docs. i've had actually were dysaut. related though so that would be my number of second opinions, 3 or 4.

[Jacquie802]

Compared to almost everyone on this site I was very lucky to be diagnosed 3 months into having POTS. I went to my PCP who thought it was anxiety. Then I ended up in the ER every week, 3 or 4 times a week and finally the hospital kept me over night to see a cardio..That cardio ended up being a life saver. They figured out that I had an arrhythmia, so I was sent to see an EP in Boston, had my ablation then a tilt table after I was still getting the high rates and poof! I was diagnosed with POTS. I consider myself to be lucky that I live soo close to Boston where there are numerous teaching hospitals, etc. Just the other day the new neuro I see diagnosed me with having autonomic neuropathy...We'll see where I go from here!

I think it's a personal decision whether you continue to get 3rd, 4th or fifth opinions, but I think if they all start getting at the same thing (POTS, etc.) then it's time to accept that..