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Dragonfly

What To Ask At A First Appointment With Dyautonomia Specialist?

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I am going to my first appointment with a neurologist that is a dysautonomia specialist to determine if I have POTS on July 10 and would love to have an idea of what I would need to know and/or ask at that appointment. I have been working with a cardiologist who has diagnosed me with syncope & collapse, mitral valve disorder, conduction disorder (unspec), cardiac dysrhythmia, and bradycardia. All have been recorded on my heart monitoring that I have been doing for the past six months. He believes after sending my information off to two electrical specialists (once of which picked up a "pre-heartbeat" as well) that I could have POTS. I currently have a 2.2 seconds with no heart beat one heart beat and then 2.2 seconds with no heart beat which is causing much difficulty. This is happening all day long with dizziness and I passed out at school in February. I also have long pauses which my Mother in law thought were epileptic in nature but yet they are not. It is just like the missed heartbeats are causing me to pause in time (if that makes any sense) - in delay and language. The meds the cardiologist has put me on have not worked up to this point - so I am currently on nothing. I have other symptoms (digestive, respiratory and back/leg) but the cardiac ones are the most difficult.

Everything started two years ago after having the H1N1 vaccine in which I had severe reaction but no one can determine what caused what. I have been to another neurologist who tested me for MS and a whole host of other disease. I have had a full spinal and brain MRI along with conduction study. All the blood work for auto immune diseases are negative, I have been tested for COPD and had an airway challenge to determine lung deficiency. All negative --- Hopefully we are on the right track with the dysautonomia but this has been the first place I am finding lots of information. I am very grateful for that!

I am feeling somewhat lost and cannot find any information on what types of questions I should be asking or what I should know before going to my appointment. Again, I am so thankful for this site and any ideas or comments would be welcomed!

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I am not sure I can tell you which questions to ask but I do suggest this:

1) Start a list of your symptoms and keep it near you all the time. I have so many little symptoms (many of which have urned out to be important to my docs) but I forget about them when they are not happening (and my brain fog takes over.) My immunologist told me that every little thing is important and to tell him n atter how insignificant or embarrassing it may seem.

2) If you have any symptoms that you can document with photographs, such as rashes, hives, flushing of your face or chest, swelling, droopy eyelid...take a picture and take it with you. I wish I had thought of this when this started 5 yrs ago because I missed some really good photo ops. This will document these symptoms and allow you to show the doc (and future docs) even if you don't have that symptom at your doc's office.

3) Write all your questions down. Especially the first visit with our crazy weird list of issues is such an information dump that it is impossible to remember it all.

Hope this helps. Good luck at your appt.

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Katybug gave some excellent advice. I wish I had done all those things myself! Welcome, Jackie, and I hope you find some answers. This is a great forum.

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Let's see... things that may help before the appointment:

(1) Read up on various things that the doctor might mention (tests like tilt table testing, etc; medication options; symptoms) so that you've got a little background and aren't spending time trying to understand some of the basic stuff during the appointment

(2) Make a list of your symptoms, definitely. When I saw my autonomic neurologist for the first time I had "symptoms at rest," "symptoms while exerting," and "constant symptoms." They will probably ask you for a series of weird symptom reports - do you cry more/less, sweat, etc. Worth thinking about those in advance.

(3) Like you said, think about questions. I asked about testing, treatment, prognosis, what types of exercise I should think about trying, under what conditions I should go to the ER, etc.

My doctor gave me a really good article by Dr. Grubb, but unfortunately I can't find it right now. It had a nifty flowchart talking about ways to treat POTS (different steps, things to try, etc) and I wish I had the citation to give you... will try to find it!

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