New Internist Wants To Research And Order Tests.....where Does He Start?

[brethor9]

Hi Guys

So last week I started seeing my wonderful internist again (unfortunately he was away for 7 moths due to his own health issues) he is a little bit familiar with POTS and autonomic dysfunction but would like to do more research and testing for me (his background is oncology, cardiac and internal medicine) he is quite brilliant and I am grateful that he is completely on board. I told him that I would do some research and talk to my friends here to see what other testing could be done to see if there are any secondary issues causing my POTS and dysautonomia. The only testing I have had done so far are;

Tilt Table

Catecholamine Testing

Pheochromocytoma

Standard Blood Work

Hormones (estrogen/progesterone/testosterone)

Thyroid

Spinal Tap

Autoimmune panel for Celiac, Lupus and some other standard autoimmune illnesses

Head and Spine MRI, X-rays etc

Endoscopy/Colonoscopy

everything under the sun of course like everyone else here I am sure

are there any other tests available that are more specific to POTS and dysautonomia??? I would appreciate any input!

So glad to have you all!

Bren

[Katybug]

Hi Bren,

Here's the list I made for someone else the other day...some overlap with yours, some different:

MRI and MRA to rule out MS, Parkinson's, aneurism, tumors, other brain and or vascular brain abnormalities

Bloodwork to rule in/out autoimmune disease, B12 deficiency, AIDS, celiac, syphillis, tick-borne illness, heavy metal poisoning, thyroid issues, adrenal issues (Cushings/Addisons),

ECG (?) to rule out seizure disorders (I think its ECG but they hook electrodes that monitor your brain waves all over your head and do various things like different sounds etc. to see if you have any seizure activity. Easy and painless.)

I was sent for sleep studies (nighttime and daytime).

After receiving the POTS dx via tilt table test which was run by cardiologist, the POTS specialist ran the following tests specific to dysautonomia:

TTT that continuously monitors heart rate and BP (as opposed to standard TTT that takes readings about every 3-5 minutes).

Breathing tests to see if different breathing patterns changed my BP or HR.

Sweat Test to check for neuropathy.

Good luck!

Katie

[brethor9]

Thanks Katie! thats a great help

Bren

[janiedelite]

An echocardiogram can also be helpful in ruling out structural abnormalities.

[Tachy Phlegming]

Without looking through your posts in particular, some of the people on here should have acetylcholine receptor antibody tests -- both the "usual" ones and ganglionic ones.

If you're doing catecholamines, also get standing and supine.

[abnel]

Does anyone know the main centres in the US where you can get both the acetylcholine receptor antibody tests done?

I don't live in the US and in my country they unfortunately don't do these tests. I have been told I'd have to get samples taken and shipped over to Mayo at a cost of $4000 in courier fees. The samples need to be put on ice for the entire journey (or something to that effect).

I think I read somewhere that these tests can also be performed in the UK and there are cheaper courier costs involved. If anyone has information for the UK or Canada that would be great.

And Tachy, did you ever have these tests done?