Getting A Diagnosis?

[m0thy]

Hi! I'm new to this forum. I figured it might be helpful.

I have been pretty ill for a while. I was diagnosed with Neurocardiogenic Syncope when I was 12 or 13 after repeated pre-syncope episodes at school. My father and sister both have the same diagnosis so my doctor didn't really run every test (I never got a TTT surprisingly!!) and we just kind of accepted that we all have it and never really knew there was anything we could do about it.

I've had some other health problems, too- I have had migraines and gastrointestinal problems since I was a child. After quite a bit of testing my doctor told me I have fibromyalgia, IBS and bile reflux. He also told me he thinks my stomach may be slow, leading me to think I could possible have gastroparesis- I am constantly nauseous and vomit a lot, and have all the other symptoms. (I'm trying to not self-diagnose here, though, since I obviously don't know the cause of it.)

After a bit of research and joining some other communities for chronic illnesses, I found out about POTS and found I have essentially every single symptom (I'm not joking- I'm only missing one or two, and that's because they conflict with other symptoms- like excessive sweating vs no sweating.) My father & sister have a majority of the symptoms, too.

I've been living with these symptoms for about 8-10 years and they kind of wax and wane, sometimes they're worse than other times. Lately they've been pretty bad and get worse all the time. I've been thinking of talking to my doctor and asking for more extensive testing to see if I have POTS (and maybe testing for gastroparesis.)

This is where I come to my dilemma, however. I have no idea how to do this. I don't know if my doctor even knows what POTS is. However, to prepare for my next appointment (which sadly wont be until June) I have been tracking my symptoms, I wrote a list of all the POTS symptoms I have, and I've been tracking my BP and HR lately (both of which have been ridiculous, there are nights I lie in bed with a HR of 150+, and my BP has been leaning towards hypertension.) I have symptoms pretty much daily, and my HR changes between 20-35+ from sitting to standing. I don't check this very often though because it makes me quite dizzy. I'm thinking of doing a "poor mans tilt table test" sometime.

What was the diagnosis process like for other people? Will I need to see a different doctor than my normal one? Will having Medicaid make this more difficult??

I'm just so lost, honestly. I've been struggling with my health for so long and I'm to the point where I use a cane, I need a walker, I can barely make it through a store, and I spend a lot of days and nights lying on the floor because I'm too dizzy to get up. And the other symptoms associated with it are stressing me out too, and it's having an effect on my mental health. (If anyone has tips on how to survive these symptoms too I'd love to hear them honestly!)

Thanks, Sebastian

[corina]

Hi Sebastian,

I'm sorry you are struggling! I think you could start at the doctor who diagnosed you with NCS, I think this doctor should be capable to dig deeper. If not, you might try to find a doctor using our Physicians list, here is a link for you:

http://www.dinet.org/index.php/physician-list

I hope you will find someone close to you!

I think making a list and taking that to your doctor might be a good starting point. As I'm not in your country I can't help you with your question re Medicaid, but may be others can!

Stay strong!

[SarahA33]

Hi there, welcome to the forum!

I'm sorry that you are feeling so poorly right now. I can relate to a lot of the symptoms that you described, it's been a really challenging and long road for a lot of members on the forum so please know that you are not alone. Like Corina mentioned in her post, hopefully since your doctor has been treating you for NCS that will allow for you to have a discussion with him regarding your concerns about POTS and further testing.

Regarding Medicaid, I'm not sure how that works for smaller or independent practices, but if you were to find a doctor through a hospital you may be able to call and see they accept it?

Again, Welcome, hang in there! - Sarah