I’m not sure if this is related to my treatment from 2005, but I am having sudden and lasting symptoms pointing to a diagnosis of Paraganglioma(s), I suspect in my thoracic cavity, near my spine (T3-T5) and I don’t know what to do or where to turn.

Has anyone else experienced symptoms with some commonalities of mine here:?


ANECDOTAL NOTATIONS CONCERNING COMPLAINTS:
Stabbing Back Pain, 2-5 spinal area, approx between T1-T3
Overall feeling of dread, gloom and doom, weepy
Overwhelming sensation of end-of-life, worry & fear driving decisions
Stomach upset, pressure, bloating, gas, diarrhea
Sharp, mild pain under Left breast on side, near serratus anterior, comes and goes, seems to be improving recently (feels like muscle tear, 2-4 on pain scale)
Perception/Awareness of strong pulse, especially in abdomen at times
Heartburn / Acid Reflux - increasing for 2 + months normally managed easily with meds
Any Sudden Noise (ie: a phone ringing unexpectedly, a car honking, or just a sudden doom/gloom thought even, gives a “jolt” - hyper sensitive to stimuli (rush of endorphins, adrenolyn maybe)
Globus sensation in throat, especially on swallowing, new physiological changes in throat area perceived
Occasional sense of “too much caffeine”/ being “hypoglycemic” w/out corresponding cause.
Excessive uncharacteristic heavy sweating on exertion noted for 3-5, years & noted night sweats the last 2-4 weeks.
Easier to provoke or agitate for 2-4 months, annoyed by things that in the past wouldn’t have annoyed
Urine output DARK RUST ORANGE color for 3+ years, especially on waking, despite being well hydrated
When first waking up most mornings, fast pulsing sensation in skull - pressure feeling (similar to a panic attack)
Chest pressure / some pain / sometimes improves with cold or heat
PVCs on EKG, feeling like a panic attack, unsettling
PVCs / possible SVTs seem related to food intake / gas / bloating / indigestion
Feeling in abdomen similar to strong hunger ping, but different and not related to hunger
Pressure in chest, side of left breast and nipple area
Back pain center of back 2-4 weeks
Gas, bloating increased 3 weeks ago - some slight improvement
Extremely Foul stools (with sulfur smell) and gas for 2 weeks one month ago, now improving
Possible vision changes - some blurriness
Blood pressure has been increasing steadily for 6-8 months (as observed) doubled atenolol to 50 each evening before bed, no noted effect
Spikes of BP, especially around 7-9:pm progressively, spiked at 235/138, seems related to or cause/effect with PVCs noted on EKG
Pressure / bloating in upper stomach
Spinal neck pain when standing or looking downward (like reading a book etc)
Feeling of being both hot & cold at the same time
Feeling "jittery" often, "on edge"
Stomach is larger recently, bloated and full; increased in size
Perceived cognitive decline 3-5 months — difficulty with recall.
Noticed for 1-2 years more irritability and over reaction to stressful situations
Urgency to urinate — 2 years — but especially relieving (overwhelming sensation of relief) for 2 weeks urine output very dark, rust colored for 2 years - especially first urine
Swollen nodes in left armpit and groin noted recently

This is a really rare thing to have happen. It is poorly understood why they occur, though there has been lots of ideas what might cause them. You don’t say much about how you were diagnosed, and if that is definitely confirmed. Please post. Your list of symptoms is quite long and perhaps not 100% related to this. When these occur near the adrenal gland, they certainly cause a ton of cascade neurological symptoms since there they are impacting something that puts out hormones, which in turn affect these many different systems you mentioned. Would you post about what additional testing they are going to do, and if positive for this what their treatment ideas are?

This is so rare I’m pretty sure you are the first to post about this in 22 years here. That means help from us outside of emotional support will be lacking. Please know that we are here to do what little we can even if it is just giving you a place to vent about all this. We hope that the resolution to this is fast, not overly invasive, and that you rapidly return to full health. B

Michaelii,
most of these symptoms are familiar to me.
Please search out or seek Post Traumatic Syndrome (PTSD) help and before that, try to work on calming your mind. It isn't easy but you may be able to gain some progress. It may be hard to believe that symptoms you are describing may be simply because of the extreme stress related to this illness and the fears it induces.

If you have a close caregiver these things may be a very big burden for them too.

Post Traumatic Stress Disorder that is.

Sorry, It was late when I typed that.......

Please also; I'm not saying there is nothing to investigate medically either. Just that among the list of symptoms, I have had many of them and they were either caused by or made worse by anxiety, fear and all that goes with it.

If you would like to go through these symptoms line by line and I would relate my own experience to provide balance and maybe perspective.