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Someone please help.......I'm frustrated


rbk343@aol.com
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Hi everyone,

I am brand new to this, but figured I would try it out, to try and find some answers!!

First, I am curious about how long it usually takes to diagnose POTS? I have been going through a lot of tests, and I know I'm not crazy. I genuinely don't feel good!!

My neurologist seems to think all my symptoms are pointing in that direction, but as of yet I still have some tests to go through. Can anyone help me out, please!!? :)

Thank You!

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Hello!

First of all welcome! The diagnosis stage is a difficult one- we've all been their though and hope we can encourage you through this. We all have different stories. The good news for you is that you sound like you have a dr. who knows what POTS is. (that is a great place to be!!)

Many dr's use the Tilt Table Test as one of the main diagnosis tools. Have you and your dr discussed this test?

I hope you find encouragement here and that you learn lots of helpful information also!

Lisa

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hi,

welcome to the forum. i think lisa's right. you're lucky to have found a doctor who know's about dysautonomia. i was lucky too. my cardio told me that he thought of something very rare and that my symptoms seem to be like that. he sent me to a neuro prof but it still took a year to diagnose (might have been two i'm not sure). a ttt is the most common test to diagnose dysautonomia. best of luck, and again, welcome!

corina :)

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Hi Rbk,

Welcome to the forum! Although I'm sorry you have to be here in the first place.

My doctor used the tilt table test to diagnose me, but it took me awhile to get to that point. Hopefully you can get one done sooner, although I have to warn you that I had a very unpleasant experience with mine. It's not dangerous, just uncomfortable.

Have you seen a cardiologist to rule out heart problems?

Hope you find the answers you're looking for :):)

-Lauren

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Hi! Sorrry about you having to go through so many test. You are however among friends and most of us have been tested like guinea pigs in an old drug experiment. Just being humorous. Seriously the TTT is the place to start and get a diagnosis. The test is painless but a little scary and uncomfortable since they are trying to induce your symptoms. My first one gave a false Negative result and my MI and syncope were assumed to be from Hypovalemia and electrolyte embalance. The second TTT was way positive and I was diagnosed w/ POTS. It does'nt stop there though. We are all trying to define why we are feeling the way we do and what meds are best. My retest on the TTT was done because I was on a high dose of Atavan and IV meds that stabalized and slowed down my body's reaction time. So my response to the maneuver (Tilt up to standing) was unchanged. Ask your doc to make sure that any meds that you are on do not effect your testing results. Keep a journal for how you are feeling and when you are symptamatic. Write down your foods, activities, sleep patterns,fluid intake,pulse, and anything that does not feel normal. All of that may help your diagnosis.

Good Luck and I hope you feel better.

Pam

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Hi! Welcome to the Forum. I hope you will find some answers to your questions here and I know you will find lots of caring people and support here! Everyone here is so WONDERFUL!

The tilt table test is very useful, but I disagree slightly with others on this issue in that it is NOT a definitive test. It is a useful tool but all the experts now agree it can't be used as the sole means of diagnosing. The reason for this is that there are many many false positives (there are also many false negatives). I'm not discouraging you from having the test because it is an essential test to have done....just trying to alert you to the fact that even if it's negative or positive, the test in and of itself won't give you an accurate diagnosis. Dr. Streeten, Dr. Low and Dr. Grubb have all said when they studied healthy control subjects they had a high incidence of people who passed out on the tilt table test that had never passed out in their lifetime. If you have this test done and combine it with your symptoms, frequency of them, blood tests etc.

Anyhow, the tilt table test is a good place to start, it's also helpful to have catacholamine testing done (it's hard to find an "average" Dr that can do this test correctly on the blood serum levels. I had to go to Mayo Clinic to get it done). Any Dr can do the urine catacholamine testing though (an endocrinologist may be best to do this though). Have you had EKG, Echo, stress test or anything like that yet?

Spinal tap can rule help rule out MS along with other autoimmune conditions that can cause problems (although this is not definitive either. If you have a Positive result then you have MS but if you have a negative you may or may not have MS).

Good luck in your search. There's lots of good info here

Again, Welcome and I look forward to chatting with you more :):)

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Welcome, but so sorry for the rough time you are having.

I agree with above statements--a tilt table test is the key test to diagnose POTS--at least for now. BTW, you do not have to pass out on a tilt table test to have a positive POTS diagnosis. POTS is an increase in heart rate of more than 30 bpm that occurs on standing. It may or may not be accompanied by lowered blood pressure. It is true that you can have a negative TTT and still have POTS--as symptoms can change from day to day--and any meds you are on might affect your response, as well.

Keeping a daily journal of symptoms and heart rate/blood pressure, lying, sitting and standing can be helpful to a doctor as well. As others also pointed out--a log of responses to eating, drinking, etc can also be helpful.

If POTS is diagnosed, your doctor may try to rule out any causes for POTS that could be addressed--such as lupus, Addison's disease, diabetes--but all too often no cause can be identified. Most people with POTS do improve with time and appropriate treatment.

take care,

Katherine

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rbk-

welcome! you've already gotten some good advice/info but just wanted to say hello. while it takes some a super long time for diagnosis, the fact that you have a doc that is mentioning POTS means that it will likely be ruled in or out sooner than later. good luck...any process of diagnosis & waiting can be frustrating so i hope you have some answers soon.

:huh: melissa

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