Adrenal Gland Tumor

For the first time ever, I am premiering a video. This video is more important than I can put into words! You, my sweet friend are invited to my Pheochromocytoma Attacks and More watch party on YouTube: Monday May 17th at 10 am est. Be sure to bring a friend and share the link!!! Don’t forget your party gear: a drink, fun snack, and cute and comfy outfit.

An amazing YouTube friend (subscriber), recently asked what happens during a Pheochromocytoma attack? I wanted to sit down to explain a little more, what is a Pheochromocytoma? I also talk a bit about the Adrenal glands and Adrenal Insufficiency. What is an attack? I go into as many symptoms as I can with as much detail as possible (with my foggy brain). There are tons of resources in the description for curious minds, care givers, patients, or anyone with a heartbeat.

www.youtube.com/watch

#Awareness #Cancer #RareDisease #adrenalgland #adrenalinsufficency #addisions #ButYouDontLookSick #InvisibleIllness #RareCancer #MedicallyComplex #MentalHealth #MentalIllness #mystory #symptoms #ChronicPain #attacks #Pheochromocytoma #pheo #NETCancer #NeuroendocrineTumor #Tumors #Pain #HighBloodPressure #AdrenalGlandCancer #AdrenalGlandTumor #Caregiver #Education #notalone #Hope #ChronicallyHopeful

#AdrenalGlandTumor

I understand medical staff at hospitals are overrun with covid19 but why can’t anyone else get help too? I had 19 lab orders done back in feb for autonomic disorders doctor and over half came back abnormal(I get lab results through the labs web site too) and doctors office called today to say everything was basically normal and doctor didn’t need to see me..... when I got the lab results myself two weeks ago and researched what they meant all the tests that were abnormal results were either high or low and the doctor was looking for it to be the opposite of what it was. Like one test said normal is 25-30 my results was 14 but he was looking for a result that was above 30 to indicate possible tumor but when result is low everywhere says either the lab performed the test improperly or there is a need for further testing. I told him the lab tech was ill prepared and asking via text to her supervisor how to run all the tests ordered. Why not perform the tests at a different lab or tell me they were inclusive but to say they were “normal” when I know they were not is a lie. I’m
So tired of doctors not seeming to care.... just keep passing me on to another doctor cause they can’t figure it out and in the mean time I’m laying here unable to walk most days and in so much pain I just want to die. I have my first grandchild being born in July and I’d really like to know him but what kind of grandma can I be lying here in bed and crying in pain all the time? My known diagnosises are
CRPS, Addison’s disease and Adhesive Arachnoiditis along with hashimotos thyroid and high cholesterol and now I’m obese since starting steroids. I have right sided face pain with stroke like symptoms and excessively high blood pressure(190s/100+) with extreme drops to 70/40 in the same day and then back up again. They say it’s unrelated to crow but no clue what it could be. This doctor thought adrenal tumor but all lab work came back as opposites for tumor so what can that mean? According to this doctor that means I’m normal? Lol I’ve never been called normal.... #CRPS #autonomicdisorders #AdhesiveArachnoiditis #AddisonsDisease #HighBloodPressure #Lowbloodpressure #needanawers #whenwilldoctorscareagain

I had Cushing's syndrome and had my R adrenal gland removed about 5 years ago. I was told by my doctor that I no longer had the disease.  It was hell to go through. I was so heavy I didn't recognize myself in a mirror.  Im still 30 lbs overweight but have started exercising and eating right.  

     It does get better after surgery. I was lucky that I live close to Johns Hopkins and they took me right away after I figured out that I had Cushing's. My doctor once told me that I had an adrenal gland tumor and not to worry about it. I was told I was making up symptoms.

     One doctor believed I was self harming because all of the bruises and rash. Especially my forearms. I called him after I got the diagnosis and he got really nervous. At this point I was fuming that no one believed my symptoms. I pushed to get the right treatment. I called Johns Hopkins after I remembered the doc telling me not to worry about the adrenal gland tumor. I went on line under adrenal gland tumor and found Cushing's syndrome. I had all the symptoms.

Needless to say I was in terrible pain and couldn't sit or walk very far. I was using a walker to get around. I had difficulty driving, broke a few bones including a vertebra. I had to have back surgery because of this. I never lost hope. I don't know how I got through. But I did

There is life after Cushing's syndrome

#Undiagnosed #ChronicIllness
Here are some things suggested I test for/rule out, either by my own logic, or a person from an online forum or community. I take it with a grain of salt but it’s good to make a list
- Endocrinologist: Diabetes Insipidus, pheochromocytoma, adrenal tumor (adenoma), hyperaldosteronism, Pituitary Gland tumor/dysfunction
- Genetic: Amyloidosis, Sarcoidosis, Scolederma (G-GMA sister had it), genetic disease sweeping
- Dystautonomia
- hEds, etc
- retesting Lyme, even though I’m adamant it’s not that and I don’t trust third party testers or the CDC, soooo.
- retesting inflammation markers, although they were normal last time

Let me know what you think! Again, please read all of this to get the full story.

#AdrenalGlandTumor

#AddisonsDisease #AdrenalInsufficiency #Adrenoleukodystrophy #AdrenalGlandTumor #CongenitalAdrenalHyperplasia #AdrenalFatigue