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No Reason For Further Tests?


JuneFlower
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Have heard exactely this argument from neurologists and cardiologists so many times. Maybe they are "right", for whatever the results of further testing would be, they won't know what to change in terms of treatment NOW. But maybe in the (close?) future any additional test result will be helpful, as research on our condition progresses!? up to you (and your daughter) to decide whether it is worth doing the tests anyway... What kind of testing would it be?

I for myself have decided I will go on with testing, just for one simple reason: I was told for more than 4 years that it's useless to continue testing, as it was "all in my head". If I wouldn't have insisted on further testing, I would have never found out that I have POTS.

Whenever one of my present docs (who eventually diagnosed me with POTS) suggests to stop testing, I tell them that I wouldn't be their patient today, if I would have listened to this "advice" earlier. Only my persistence on further testing brought me more insights about my condition. I won't give up this attitude.

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June,

I think it depends on what tests she's already had. Some tests confirm suspicions but really don't change the course of treatment. For example, the lab did my catecholamine testing totally wrong (which had been ordered by my cardio). When I took the "results" to my pots neuro he knew right away the test hadn't been done properly. But he said he wasn't going to bother having the test redone because I obviously get into hyperandrenergic states just by clinical analysis so he was going to treat me for the symptoms regardless of how the blood tests came out. But, I think there is other testing that can be invaluable that can't be determined with anything but the test like sweat testing.

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cardiologist already said she has POTS with overlying severe hypotension. She's already on 2 drugs. We are considering Florinef as recommended by the same neurologist who in the same breath said that stress management would cure her. She is scheduled for the autonomic testing (sweat test, tilt test, and something else I think). She is seeing a specialist in POTS for these tests and this will be her 1st visit to anyone who really knows autonomic dysfunction.

June

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I had the testing done for my son as well. He was originally diagnosed with 'autonomic dysfunction' without any testing done based on symptoms. Without the sweat test we would have never known he didn't sweat anywhere on his torso, which explained why he would cramp up when he was able to play soccer. My thought is...the more you know..the more you know. Plus, actually seeing a specialist in the autonomic dysfunction opened up the door to many other medications used to treat POTS.

We went through a trial and error with medications before finding the ones that work or at least helped him. If she isn't having any or much improvement on the med's she currently takes, maybe it is time to try new ones. Midodrine didn't help my son at all, but florinef did.

Christy

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I have mixed feelings on this. To test or not to test. I read an article not too long ago that was discussing how to cut unnecessary hospital costs. Get rid of unnecessary tests was one option - and the TTT was specifically cited as a test that is generally unnecessary. A poor man's TTT can give a pretty good indication of whether a legit TTT would be pos or neg, especially for POTS.

When I first suspected I had POTS, rather than wait for my GP to figure things out, I made an appointment with my (luckily) close by POTS specialist neurologist. My GP had already prescribed a TTT, but my then-new neuro said not to bother - she knew I had POTS, I was already on a few meds from my GP that were helping, and the TTT wouldn't change my treatment. Another example - when I started having constant nausea, I had a gastric emptying test which came out normal, but didn't stop the gastroenterologist from (rightfully) diagnosing me with gastroparesis.

Do I think that you'll get much, if any, info that will change the course of treatment? No. But I do think that the peace of mind that comes with knowing what's actually going on is worth something. Even though my neuro told me not to bother, I ended up going through with the TTT. The cardiologist who interpreted my results diagnosed me with Inappropriate Sinus Tachycardia (nope) and Neurocardiogenic Syncope. 1 out of 2 isn't bad. :lol: My POTS neuro looked the results and said, basically, I told you so. And then told me that a HR of 155 wasn't that bad. Hahaha. I beg to differ.

My point is, even though my treatment didn't change, I'm glad that I did the tilt test. It felt good to know for sure, especially with a syndrome that is so often misdiagnosed. Proof was good for my peace of mind.

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Libby- well I actually have no doubt that she has POTS with low blood pressure. I wish they would find out why her blood pressure is non existent. Her current dr doesn't seem interested in finding out why. Also she is still very debilitated. So I guess what you are saying is there is no treatment? Cause right now, she is no better.

June

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Hi June,

If your daughter has had all the standard testing for POTS and it has been confirmed then I might let it go. I would concentrate on finding an underlying cause. But if you think a doctor will doubt the results of first test. it might be wise to get it reconfirmed by a well know POTS specialist.

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wouldn't a POTS specialist be able to find the underlying cause?? She has a cardiologist who has done orthostatic blood pressures, (lying, standing). That's the testing she had. I'm not sure what the standard tests are? She had average bloodwork (chemistry, CBC, diabetes screen, addison's test) and its all normal. That's it so far.

June

PS-I don't doubt POTS dx but want to find out why her blood pressure is so dangerously low and she has such trouble maintaining her weight. She's almost been hospitalized twice for a severely low BMI.

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POTS specialists are usually cardiologists, neurologists, or electrophysiologists. They can usually help with the dysautonomia treatments which is mostly symptom control and the good ones will who are really diligent and interested in truly getting patients better may pick up on symptoms that will point you to other specialists that are relevant. For example, my pots neuro referred me to the geneticist that diagnosed my EDS. But, unless the underlying cause is pretty straightforward, you will probably end up also needing to incorporate other specialists in the process. I have a geneticist for the EDS, an immunologist for the MCAS, my pots/migraine neuro, a cardiologist, and now have added a neurosurgeon. Each of these docs are playing an integral part in my care.

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Hi June,

The TTT and other testing you mentioned is what my son had when he went to a well known clinic in December of 2011. My husband and I begged them to hunt for an underlying cause because my son had symptoms at that time that did not match POTS. They did a few other test that our local cardiologist requested but after that we were on our own. They said the other symptoms were psychological and dismissed it as" our son was trying to get our attention". After much testing, we finally have answers.

I had to seek out other specialist that would check out other medical conditions. If your daughter gets sick or catches things so easily my first suggestion would be to find a good immunologist. For gut problems a gasto doctor would be best. It is like searching for a needle in a hay stack. I have been doing this ever since my son was diagnosised with POTS. Our cardiologist also knew something else was involved and ran whatever test he could to help us figure out what was causing his POTS.

If you do not have a POTS doctor that is compassionate and believes there is an underlying cause, you may need a new POTS doctor. Some POTS doctors may want to help find an underlying cause. If I were you and this was my concern, I might call and ask if they will seach for the cause. Most of us on the forum have had to seek out other specialist. BTW most specialist have no idea what POTS is and you will have to explain it to them. Our last immunologist had never heard of POTS.

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Rachel-I'm so appalled that even a specialist clinic would treat you and your son in such a deplorable way. But I am not surprised. As I wrote I just came front the second doctor who said straight to my daughter's face that her lack of stress management is causing her severe low blood pressure and all her other symptoms. I think doctors say this when they have no answers.

I am taking her to a POTS specialist who also has many other disciplines at her disposal. We will have some of the autonomic tests done and hopefully get some clarification and maybe more information. She does get many infections but her nutritional status at the moment really explains that. So I don't think I need to take her to an immunologist. If she gets better nutritionally and still keeps getting sick, then we will explore that.

The specialist she is seeing is a neurogastroenterologist and POTS specialist.

June

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My former neurologist knew little of ME/CFS and autonomic dysfunction. All he did was refer me to the pain clinic. I have had some tests done like ECG, Echocardiogram and Breathing Tests, but not TTT even though my BP and HR massively changes on standing etc. They know I've had permanent tachycardia since 2000. I think there should be more investigations it's just that it's not the neurologists area of study and you need to see a cardiologist, respiratory doctors etc. Leaving it won't help one bit. I need to see someone who knows about the whole condition and can treat it accordingly as it's so complex it covers several areas of medicine and involves so many disciplines. I am hoping to save up to see a doctor in London who treats people with POTS, he's a neurogastroenterologist and and also interested in EDS.

I hope you can get somewhere and it's not left like I was until it got bad. I still don't have mine properly diagnosed.

Ah! Sorry, I didn't read your later posts saying that the tests were scheduled. I hope you get some progress on this as this is far more than I have achieved.

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TCP- thanks for our interest. She has a cardiologist and a gastroenterologist and a neurologist. None of them know much about POTS though. So they each just shrug and say things like, "Once she gains weight, she'll feel better. Or, She just needs to manage her stress". Ugh, Sigh. I know my daughter and she used to love school and she is so unhappy to be home and be sick.

June

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Have you looked into specialists in other areas? I know the closest to me are Birmingham and there are a few in London UK. Some doctors specialise in POTS and some in EDS. I will have to save up to see anyone. If the tests are done it is some way there and it should all go on the medical notes. I educate doctors whenever I can and sometimes they are genuinely interested. Maybe if you can tie things together it will present a more definitive picture. I need more tests done.

I hope you get somewhere and find someone who can help. Do you have any support groups, we have POTS UK and they have a list of recommended doctors.

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No, I'm not saying that there's no treatment. I'm saying that if she has POTS, I really don't think that any results that you may get from the the tests will change the course of treatment. At this point, you have to decide if you want them to satisfy your own curiosity, not for any diagnostic value. And I'm also saying that the psychological impact of having imperial evidence to support the diagnosis is not insignificant. But that said, none of the tests are fun or painless. It's a trade off.

As far as I know, the ultimate cause of POTS is only discernible in a small percentage of patients. Chiari malformation, EDS, Marfans, etc. There is research being done on what other factors influence the symptoms, but most of it isn't at a point where it could influence treatment decisions.

In my opinion, further testing - unless there's a question as to hyper POTS, or chiari malformation - will not give any further insight into treatment. Treatment is trial and error, seeing what works. It's a frustrating process. But I hope that your daughter's doctors are able to determine an effective plan as quickly as possible.

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Well the local doctors won't try anything other than what she is on. (Midodrine and nadolol). Both of these help but we have a long way to go. I am hoping a specialist will at least suggest other treatment based on the types of POTS they discover. I don't know what kind she has. Yeah I don't hunk a simple TTT is very useful from everything I've read. But we'll see about the other tests.

June

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