What Have You Been Tested For And What Would You Like To Be Tested For?

[misstraci]

This may be a slightly broad topic but I'm just curious what others have already been tested for and also, what you would like to be tested for but have not yet done so.

I do not know what has caused my dysautonomia nor do I believe that this is all that is going on here. I sat with this diagnosis for the past two years because I was told it was something I just have to learn to live with but I refuse to live like this, It feels almost inhumane. I am determined to figure this out.

My symptoms include (but are not limited to): lightheadedness, pre-syncope, palpitations, tachycardia, dizziness, shortness of breath, seizury-head feeling, fatigue, over-all bad, feel like I'm dying feeling. Not right/off feeling. I've lost my independence and my confidence because of my symptoms, I just want my life back!!!

I have been tested for/tests I've had: lyme, brain mri, abdomen ct (nutcracker syndrome), thyroid, parathyroid, tilt table (dysautonomia diagnosis), cortisol, cardio stress, pulmonary breathing tests ....... i can't think of what else but there has got to be more. two full years of testing, there are more, i just can't think right now!

What I'd like to be tested for: eds/vascular eds, holter monitor, mcas, seizure (eeg)

Thanks for all your responses!

[HopeSprings]

I want my life back too. Avenues I'd like to explore are... chiari/neck issues, vascular EDS, and nutcracker syndrome/renal vein.

[misstraci]

Naomi, thanks. I forgot about the Chiari, I'd like to check that as well. I've seen a lot of talk about it lately. Do you know how it's looked at.... is it a basic brain MRI or something different?

[HopeSprings]

I don't know much either, Traci. I was told here that a basic MRI should show something, but there are other tests they do and I think you'd need a Dr. really familiar with the condition. I'm going to send info and try to talk to someone at the Chiari Insitute in NY (I'm in NJ, so not too far) to try and learn more. Since they're neuro-surgeons, I'm also hoping they'll be able to look at my neck issues and tell me whether this might be a contributing factor.

[peregrine]

Tested:

Causes of small fiber neuropathy (diabetes via HB A1C blood draw was negative, Sjogren's via anti-SSA/Ro antibody was negative, B12 deficiency via blood draw was negative). Chemistry, complete blood count, thyroid all negative.

POTS-related: TTR sequencing (to test for amyloidosis, my gene looks fine). Paraneoplastic panel sent to Mayo for nictotinic acetylcholine receptor antibodies, that was normal too. 24-hour urine sodium has been normal to high. Holter monitor, numerous EKGs. Full TTT including QSART, metronomic breathing, Valsalva, and tilt.

Causes for joint issues: various rheumatology tests (Lyme, sedimentation rate, ANA, RF, anti-DNAse) also all normal. Vitamin D is low to normal.

Things I'd like to have tested:

Standing and lying norepinephrine.

Some way to look at whether I actually have cerebral hypoperfusion.

Ifff there were some way to conclusively look at collagen issues with JHS/EDS III, I'd love to hear it!

[NMPotsie]

Misstraci I could have written your symptom list! This is a great question as I often wonder if they've missed a test. I've had these:

Tilt table (2--one 10 min and one 30 min) and standing test (where they have you use your leg muscles to stand), plasma catecholamines, urinary catecholamines, stress test, echo, doppler echo, multiple holter monitors, long term event monitors, hypovolemia, every vitamin deficiency you can have, immunoglobulins, EBV, RA, C reactive protein, celiac disease, Qsart, valsava, pulmonary function test, overnight pulse ox, sleep study (suspected apnea, but negative), multiple ct scans (with and without contrast), inner ear issues, EEG, MRIs with and without contrast, cortisol, thyroid (about 7 of them, all normal), pheochromocytoma, a host of blood panels, std panel (yep, one doctor was sure I had syphillus because of my "brain fog"), and more that I can't even recall right now.

Every single doctor, except the neurologist at Mayo and the ones who check my vitamins, say I'm the healthiest person "on paper" they've ever seen. Two cardios said my heart was "structurally perfect" even though I have all kinds of weird palpitations and tachy, etc. The endo said my levels were all exactly where they should be, my lung function is well above average for my age and weight, I have "beautiful sinuses" (yuck, but that's what he said), my brain works well, and my nutritionist says my cholesterol/lipids are "insanely good." Still, I can't stand for 10 minutes, and I pass out if I try much longer, and I feel like I'm 80 years old; I'm also in the ER once a month for an infection, or spontaneous episodes of aniphylaxis. That's how useful those tests have been.

I'd like to be tested for MCAD. I have an upcoming endoscopy to check for esophogeal eosoniphilia (spelling?) and will be getting an allergy panel performed. I think the allergy thing will help more than anything.

[misstraci]

Thanks! Good luck Naomi if you go see the Dr. in NY, let us know how it goes, I'm very interested!!

Peregrine.... Wow, you've been through so much, I hope you are able to get the tests you want, what is cerebral hyprofusion?

NMPotsie..... We're potsy twins You have had "the full work up" as my dr says, i hate it when he says that too, its like he wants to be done and not keep digging, i'm the only one who wants to dig and find the root!! I'm glad all your tests look good on paper but i'm sorry you still feel terrible. I'm thinking about getting tested for MCAD as well, that is, if I can find someone who will do it.

Good luck you guys; I just enjoy hearing what you've been through and what you'd like to have done!!!

[Mytwogirlsrox]

I would like to investigate EDS, chairing malformation, achr antibodies, neuropathy (qsart etc) Lyme, Stress test

I've already been tested for a pheo, carcinoid syndrome, brain/ abdominal abnormalities, vein abnormalities, endocrine issues, echocardiogram& ECGs/ holters, TTT, Ana, sed rate etc...

My diagnosis: patent Foreamen Ovale, intra septal aneurysm, orthostatic tachycardia, broken valves in saphenous veins, generalized anxiety & NCS

My symptoms: orthostatic tachy, Pre-syncopal sensation upon standing, & anxiety.

[sue1234]

I've been tested for everything under the sun regarding endocrine things. I've had a pretty thorough physical POTS work-up.

The two things I'm concentrating on this year is:

1. To have the Autoimmune Dysautonomia labwork done, which I just had the blood drawn yesterday for. I couldn't get in with Dr. Vernino, so my new neuro agreed to run the whole panel.

2. Wondering about my cervical stenosis. After the Dys. panel results are in, and if it is all negative, I will ask to be sent to that group's specialist for Chiari and cervical stenosis.

If this POTS thing is going to be with me until I find a root cause, the possibilities NEED to be eliminated! I have had this for 6 years, and I just went from doctor to doctor hoping someone would look deeper. They didn't. So, now I am going to the doctor with the possible causes, one appt. at a time, and asking to rule this or that out.

[HopeSprings]

1. To have the Autoimmune Dysautonomia labwork done, which I just had the blood drawn yesterday for. I couldn't get in with Dr. Vernino, so my new neuro agreed to run the whole panel.

Good for you, Sue. Glad you were able to get it done.

[peregrine]

Peregrine.... Wow, you've been through so much, I hope you are able to get the tests you want, what is cerebral hyprofusion?

Cerebral hypoperfusion roughly means "not enough blood circulating through the brain" - hypoperfusion (from hypo = low, perfusion = movement of blood through a capillary bed) in the cerebrum (the thinking part of your brain, as opposed to the cerebellum which controls things like motor control). There are some things you can do with transcranial Doppler ultrasonography (roughly, they do an ultrasound of the cerebral artery using a sensor on the side of your head) to measure cerebral blood flow, but hardly anyone does it. I'd like to see if the spaciness, presyncope, etc (which are my worst symptoms other than brain fog) are correlated with it at all.

[peregrine]

1. To have the Autoimmune Dysautonomia labwork done, which I just had the blood drawn yesterday for. I couldn't get in with Dr. Vernino, so my new neuro agreed to run the whole panel.

2. Wondering about my cervical stenosis. After the Dys. panel results are in, and if it is all negative, I will ask to be sent to that group's specialist for Chiari and cervical stenosis.

Sue - you might think about looking into the cervical stenosis as well even if the dys panel is positive. Sometimes POTS symptoms (as in my case, with some hypermobility involvement, some neuropathy, and a medication trigger) can come from multiple causes - better to rule them all out rather than settling with the first one if you (and your insurance!) can handle the extra visits?

[sue1234]

Peregrine, yes, good idea to have the cervical issues addressed no matter what!

It's funny, kind of, that I actually had the transcranial doppler ultrasound to see how the blood flow was doing. The only problem was, they did it while I WAS LAYING DOWN! Now does that make any sense?? Of course everything looked fine lying down.