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Doctors And Tests- A List Of Tests


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Hi Everyone, as you might know by now I've been doing a ton of research into our syndrome. Now it's time I concentrate on making some good specialist appointments.

So I'm asking for everyone help so that we can all have a good list.

Can you make a list of doctors you've seen and the test we should all get:


POTS Dr.- Tilt, etc..

Cardio-Echo, EKG, etc..

Pulm- CT, Pulm funct.

Endocron- Adrenal, thyroid, etc...

Neuro- MRI, MRA


Immunologist-mast cell test

Please also list special test, especially blood test and why they tested for that or why you thiunk they should


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One thing I was thinking as having EDS with this is that I have Chiari I which is not so unusual. When MRI reveals Chiari I, lying MRI is pretty much useless when one begins experiencing symptoms of dysautonomia and should have sitting MRI and the CSF flow studies.

I had the complete metabolic profile and special chemistries many many times including checks on the iron, IBC, and other anemic panels, plus all the vitamin/mineral levels to ensure there were no deficiencies contributing to any symptoms.

Another thing (since I see Infectious Dis. doctor for osteomyelitis and have multiimmune deficiencies--thus being referred for Mast Cell activation and other testing, I read that H.pylori or immune agents as cause of asthma so perhaps the upper end endoscopy might be necessary). I don't know as I'm still a newbie, reading and learning. (That would be gastrointestinal--the H. pylori). I also had pill cam when B levels were deficient and with the unimproved gastritis and GERD and IBS to rule out Celiac Sprue or other upper GI ailments.

My immune labs included T cells, T helper cells, IgGs, IgG subclasses, lymphocyte count, gammaglobulins.

I've also had repeated tests for ANA, RF, SLE, ESR to check for autoimmune type things.

I pool blood and am a 'bleeder' with history of hemorrhages. Given the history and in seeing my purple feet, my cardiac specialist in dysautonomia ordered a Delta Granule Storage lab test (and I am deficient so my test was positive for Delta Granule Storage Pool Deficiency).

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Hi Rich, this is what I've had:

Cardio- ekg, stress echo, two week event monitor: all were normal except the tachycardia episodes but no explanation for it

neuro- CT angiogram, mri, tilt table, baroreflex test, heart rate variability test- all abnormal but not specific for any known autonomic disorder (according to that doctor)

endo- thyroid, aldosterone, cortisol, chromogranin A, tryptase, metanephrines, urine catecholamines, glucose tolerance test, insulin, 5-HIAA: all normal

nephrologist- ultrasound of kidneys, cpk, creatinine, bun, proteins- all normal

rheumatologist- ana, ccp, ss-a, ss-b, cardiolopin antibodies, cbc, metgabolic panel, urinalysis, rheumatoid factor: ccp positive, rheumatoid factor positive, ana positive: only new find was the ana, I already knew I had rheumatoid arthritis (ccp antibodies)

psychologist- positive for generalized anxiety disorder :)

pulmonologist- sleep study, ENG,= all normal, he would not check my lung function cause my oxygen saturation is normal

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"When MRI reveals Chiari I, lying MRI is pretty much useless when one begins experiencing symptoms of dysautonomia and should have sitting MRI and the CSF flow studies."

Sorry Rich - not to intrude on your post, but just have a question for Ruby. Ruby, I have thought about the statement made above before. Are you saying a laying down MRI can or can't reveal a Chiari? I've been checked for this and was negative, but I keep wondering because I have a lot of back of the head and neck pressure and my symptoms are definitely worse when this symptom is worse. When I get up in the morning, the first place I feel it is the back of the head/neck and it sort of feels like it swells up. What type of Dr. would understand the connection between dysautonomia and this part of the anatomy? I keep making them look at my neck MRI's :rolleyes: and they say my neck problems are not related. I do think a sitting MRI would reveal much more, but you'd need the right person to interpret the results? And what's a CSF flow study? Thanks.

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My son's vitamin D became extremely low and his iron reserves were depleted. So have iron and vitamin D checked.

Also, if GI related issues have motility testing done-gastric emptying test, there are other tests as well that I can never remember the correct name of ...duodenal ???(Julie-Mack's mom help here).


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A supine MRI will show a Chiari I if one is there, but when I read about and viewed videos from the Chiari Institute (I think it's around LI, NY?), and also on Dynamic Imaging Center website about sitting MRI's, they explain that the size (i.e. 2 mm or 7 mm) lying down is really not the significance. It is rather, if you are experiencing these symptoms, no matter how small, you need to have a sitting or standing MRI since it only stands to reason that gravity pulls the cerebellar tonsils farther down into the spine, perhaps blocking spinal fluid flow around and impeding the circulation in the brain.

I have the neck pain too. And if I hyperextend my head accidentally when getting into bed at night--boom headache that lasts all day. PM said years ago that I had cervical neruitis but no treatment benefitted me. My neuro here in boonies doesn't really understand my EDS (big red flag) and Chiari significance--but it is also significant with symptoms of dysautonomia altho they are two seperate/different entities. I suspicion if I really, really want this pursued, I must find a neurosurgeon or a university affiliated neuro center (my gut says neurosurgeon) to evaluate as they are the ones who operate on brain structures. There are some Chiari Institutes but I believe they are relatively few. But a good starting point would be finding someone in network, calling and asking if they are practiced (or looking at their clinical interests on-line) in Chiari I. The reason I say University affiliated neuro center is that that is where I found the closest sitting MRI imaging center to me--2 hr drive by OSU.

I hope that helps. I will try to find the link here.

http://www.chiariins...deos/index.html. You can scroll through the videos and watch and learn. I think I found this link from another poster here. Dynamic Imaging Center (around OSU in Columbus, OH) has a website that explains sitting MRI's too.

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Here's a list of tests they've run on me (brain foggy these days so may not inc. everything):

Exercise stress test

Cardiac sonogram (evaluate heart abnormalities like mitral valve prolapse)

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

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Let me explain further:

QSART - because several tests from Vandebilt and unpublished data from Mayo implicate reduced sweating and partial denervation in some POTS patients

MIBG - because several studies (one from Germany with an intro by Dr David Robertson) demonstrate reduced MIBG cardiac reuptake in a subset of POTS patients (implicating either partial cardiac denervation or reduced norepinephrine reuptake)

Angiotensin II levels plasma - because they are elecated in many POTs patients as per Stewart/medows, and Raj Satish

MSNA - conflicting studies suggest elevated, normal and low MSNA rate (this is the nerve firing rate that demonstrates how out of whack your parasympathetic and symapthetic orthostatic responses are)

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I also forgot that I was tested for Lymes (by hospitalist filling in for my internal med PCP when I was hospitalized). My lab test (except for the Delta Granule Pool Storage) were ordered by both my PCP (nternal med) and/or rheume (internal med).

Urine metanepharines were ordereed by cardiologist at my request.

I already knew my standard endocrine tests (thryroid profile, FSH, 24-hour urine cortisol + serum cortisol, fasting blood sugar) regimen from having had pituitary tumor removed/being followed by endocrinologist and so had my PCP do those tests and checks.

The iron studies/vitamin D deficiencies were ordered by my rheume. Rheume ordered my first sleep study and neurologist ordered a second sleep study.

My PCP ordered the ESR, ANA, SR, RF (but you can have neg. RF but still have RA), SLE and others I cannot recall off the top of my head. My PCP orders the special chemistries and vitamin checks at my reminders. She also ordered my Pulmonary Function Studies (asthma out of control unbeknownst to me).

Pulmonologist ordered CXR and then CT lung that showed I did have a pneumonia at one time (when I was symptomatic, 3 CXRs failed to show pneumonia). Sleep study doctor (pulmonology if I recall) did the sleep studies at 2 different sleep centers--both showing I never acheived deep phase of sleep, had very little REM, had hypersomnia. Sleep doctor had also run sleep deprived EEG to R/O seizures.

The MRI/MRA was ordered by hospitalist (on behalf of my PCP) when I was hospitalized (showing Chiari I which I'd already known I'd had from prior MRIs ordered by ER physicians and neurologists when I'd had migraines).

My echocardiogram,ultrasound of abd. and pelvis, dopplers of my lower extremeties, cardiac stress test were all ordered by my PCP.

TTT and 30 day event monitor were ordered by cardiologist.

Delta Granule Storage Pool lab test was ordered by Cardiac specialist in dysautonomia.

The immune testts had been ordered by my Infectious disease doctor (and am now being sent to 2 specialists at a Cancer Center for multicomplex immune deficiencies--an allergiest/immunologist with interest in Mast Cell Activation, and another hemeoncologist there who specializes in bleeding disorders and immunology.

My gastroenterologist did my scope finding the GERD and gastritis that I already knew I'd had. I also know. He also did pill cam when iron def anemia and B deficiency was found to R/O Celiac Disease or something else. I have gastroparesis but am waiting to return to him to explore that since I know how to eat and have so much more going on right now.

Please see my reply to naomi as to the info about the sitting MRI (it went into detail). A rheume (internal med) who specialized in fibromyalgia (which I have) added the diagnosis of EDS III and the cardiac specialist in dysautonomia who is well-versed in EDS concurred with that diagnosis. I see a genetecist next week for the 'official' lable plus to decifer if classic or mix as well.

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My POTS neurologist did the sweat test and breathing tests. I have been tested for autoimmune issues by several of the 24 docs I have seen in the last 4 years because I symptomatically fit several autoimmune diseases. Most recently my POTS neuro re-ordered several blood tests for autoimmune indicators but I have also had it done by an 2 Infectious Disease Specialists, Rheumy, & 2 PCPs. They just can't figure it out.


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Tests I've had:

GP (general practitioner / family medicine)

- ECG (= UK name for EKG), showed tachycardia.


- ECG (tachycardia)

- Chest X-ray (normal)

- Echo (mild MR and TR, nothing significant)

- 24 hr Holter monitor (episodes of tachycardia)

- Cardiac memo (no recordings as I fainted and couldn't hold the device to my chest)

- External loop recorder (no syncope during the 6 weeks I wore the recorder)

- Tilt Table Test (TTT, continuous ECG, BP every 3 minutes) (heart rate 169, BP 96/90, diagnosed with POTS)

Electrophysiology Cardiologist

(I was referred to EP because of a family history of HOCM and they were worried I might be having episodes of VT)

- ECG (tachycardia)

- Electrophysiology Study (no arrhythmias induced)

- Implanted Loop Recorder (reveal device) (sinus tachycardia, sinus pauses)

Neurologist at specialist Autonomic Unit

- 24 hr BP monitor (episodes of tachycardia and hypotension)

- full 1hr TTT (with beat-to-beat BP recording) (showed POTS)

- autonomic function tests (valsalva, cold pressor response, hand grip) (no neuropathy)

- TTT after fasting then repeated 1 hour after liquid meal (confirmed POTS but no change with meal)

- Poor man's TTT (standing HR & BP for 15 mins) before and after exercise (cycle ergometer pedalled whilst lying flat) (confirmed POTS, POTS worse after exercise)

- Thermal threshold nerve tests (normal)

- Basic nerve conduction study (normal)


- diagnosed Ehlers-Danlos Syndrome by clinical examination, no testing done.

Several years later a neurologist found clinical signs of peripheral neuropathy and balance problems.

Neuro advised multiple blood tests, some were done but any not available in Wales.

-B12 levels (confirmed B12 deficiency), treating with B12 injections has improved the neuropathy symptoms

- I am still waiting for the MRI Brain & Spinal Cord, and Nerve Conduction Study that should have been requested last December.

Other tests done by my Gastroenterologist (all but flexi sig done last week) (I have chronic diarrhoea and over last few months have developed nausea and vomiting)

- flexible sigmoidoscopy (normal)

- OGD (upper endoscopy) (showed stomach full of bile)

- Oesophageal manometry (borderline normal but I was taking Alverine Citrate)

- 24hr Oesophageal pH (108 episodes f acid reflux in 18 hours but less than 5% of total time so test normal I was taking Ranitidine)

- Lactose-Hydrogen Breath Test (probably shows Lactose intolerance)

- Glucose-Hydrogen Breath Test (negative but a specialist has told me test should have used lactulose not glucose and been tested for longer that 2 hours as I may have gastroparesis complicating matters)

- B12 (within normal limits on monthly B12 injections)

- Red cell folate (high, on folic acid supplements)

- Full blood count (normal)

- Faecal elastase (awaiting result)

- Faecal pH (awaiting result)

- Stool microscopy, culture and sensitivity (awaiting result)

- Duodenal biopsies (awaiting result)

- Duodenal aspirate for culture (awaiting result)

- Transit time study (swallow capsules containing metal markers then have daily abdominal x-ray to track their progress) (I'm having this test next week)

My gastro problems are probably FODMAP intolerance causing diarrhoea, Small Intestinal Bacterial Overgrowth and possibly delayed gastric emptying. On a FODMAP free diet I go from diarrhoea 8-16 times per day to total constipation which makes me think that my underlying GI transit time is actually slow and the diarrhoea is due to the osmotic effect of undigested FODMAP sugars in my lower I system.

Sorry there is a lot of GI stuff there that may or may not be related to my autonomic dysfunction and Ehlers-Danlos Syndrome.


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