Paraganglioma

[Prettytired]

Has anyone checked into/ruled out paraganglioma and/or pheochromocytoma? I saw a geneticist yesterday and these were 2 he brought up because my BP was running a tad high, I have many of the symptoms, & the symptoms come & go throughout the day. He’s ordering the catecholamine testing to check.

Just curious… thanks!!

[Give My Daughter the Shot!]

Hi.

Please, do not be surprised to hear that I have never heard of that. I just wanted to ask that you keep posting on this. When you posted the other day, I looked it up and it appears that there are diagnostics (blood, urine, etc) to test.

I do have the symptoms listed but I don’t suspect a tumor, necessarily. I just thought that throwing this ‘extra tube’ into my next bloodwork panel might be an option for me.

Today at the doctor, for the FIRST time, my BP was high enough that the nurse had to ‘step back’, pause, and re-take it. I never have been caught with high blood pressure before (in that setting). When she calmly said she was going to wait a minute and re-take it, I told her that I could feel something going on. I could totally feel something going on with my chest primarily as well as a couple twitches. I didn’t, however, know that it would register. I don’t know my heart/body well enough to know whether my heart, blood pressure, pulse or whatever is affected. I just knew that something was up (wish I’d been able to pay better attention). Was I meeting my definition of ‘bottoming out’? Dunno.

My point… now I’ve had a confirmed and documented episode of high blood pressure. My son is having trouble with his blood pressure being too high also.

My friend who accompanied me to my appt argued with me that it was a fact that people get nervous at the doctor and dentist. Just between you and I – IT DEFINITELY WASN’T THAT!! It is insulting when people treat me like I cannot tell the difference from anxiety and my body randomly ‘freaking’/’shutting down’/’bottoming out’. Then, to go one further, and define/explain/present facts and ram it down my throat. I tried to explain that you could probably put a diff cuff on each arm and come back diff (which I’ve never tried). I PROMISE YOU THAT SOMETHING SIGNIFICANT WAS OCCURRING (that’s all I’m saying). I got the eye roll. Try articulating dysautonomia!!!!!!! Not a simple task, not at all!!! Nobody ever ever gets it – not ever ever!! Even if they know what it is, I can tell that it is just incomprehensible.

Hugs and please keep me posted. I don’t want a tumor but I would like some diagnostic proof (which might hopefully evolve into treatment or at least maintenance).

I’m not trying to shift to myself. I just wanted to respond. Sadly, I haven’t figured my health out well enough to be the one with the answers at this point. It would be great if you could follow up with information about your experience. We’ll be praying for you.

[Barbara]

I’ve had my BP cuff at home on both arms (different results, for sure). I also took a set from laying, to sitting, to standing, to leaning forwards, to getting on my knees, to getting on all fours – the measurements went crazy!!

I also got a pre-natal heartbeat recording device and strapped it to my chest to record the sounds of my weird heartbeats in the above positions – and videod it for the record of what positions I was in!
Regards
Barbara
(UK)
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Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; GERD; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Mild Scoliosis; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!

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