MY TUMOR STORY TIME PART 1: PHEOCHROMOCYTOMA SYMPTOMS
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- čas přidán 7. 05. 2017
- A lot of you have asked me a lot of questions about my tumor that I was diagnosed with, and had removed in 2011. This is the first in a 3 part series talking aaalllll about my tumor. Sorry it's so incredibly long. I wanted to be thorough.
When I got my diagnosis I was unable to find a survivor of this type of tumor, and I had no one to talk to about it, or ask questions, and I really could have used a happy ending story from a survivor as I approached an incredibly dangerous surgery. I hope this series can help even one other person who is going through this struggle, or inspire those of you who need motivation to keep going. Keep going. Keep asking questions. Keep looking for answers. You're not alone. ♥
Intro music by Alexander Osborn: / indie-rock-showreel-music
www.alexanderosborn.tv
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Katrina Sherwood
PO Box 1126
Culver City, CA
90232
Hi, I'm Kat, and I make lots of DIY videos, about everything from DIY jewelry, home decor, gifts, and crafts, to Gluten Free recipes, No-poo hair care, DIY hair extensions, how to make sugaring wax and arabic wax for natural hair removal, and how to make a bracelet out of a toothbrush. Here you can watch videos about friendship bracelets, whitening your teeth with activated charcoal, or even skip on over to my second channel for Story Time videos and vlogs!
Shiny, Pretty Things! - Jak na to + styl
"It's psychosomatic" ... every doctor's favorite sentence!
Roughly translated into layman's terms "I can't figure it out but I don't want to admit it, so I'm going to 'cure' you by blaming it on you."
“It’s anxiety”…
Translation: "I have no idea what this is". Lol
Exactly. I have Ehlers Danlos Syndrome so I’m extremely familiar with “psychosomatic” pain. Hear my sarcasm? 😉
My mom's, too :(
Your health sounds like it was miserable!!!! I thought I went through a lot, and I did, but this is just so much! You are such a strong woman and it's so important for you to share your story.
Really appreciate what you are doing. Not just raising awareness, but telling the story from a patient POV. It helps medical students A LOT.
watching you talk about your illness makes me feel less alone. my doctors don't believe me either yet.
my docs believe me. My family on the other hand...it's weird to have it backwards. My GYN wants to check my ovaries and thyroid...
I’m sure your Google research is more accurate than science. Try a psychiatrist.
Same
A.J., ...does that stand for “asshole/jerk”?
Cloud cutie that's terrible that you went through that, I'm sorry, I hope your doing well now, please turn to Jesus He loves you and will be there for you in life when no one else is, God bless
So I'm not crazy! I have been having these symptoms all of my life and have been pill ridden to death! All doctors know how to do is treat symptoms then get to the bottom of the cause of them. Thank you so much!
Omg, I'm so sorry to hear all of this! It must have been terrible! I'm sure you are so happy this is all behind you now!
I watched this video a few months ago and your story resonates with me so much. I have been ill for 6 months trying to get to the bottom of my issue. I have felt the “impending sense of doom” since i was a kid. I have never been able to even tolerate someone yelling without my adrenaline going crazy. Seeing an endocrinologist in a month after seeing multiple specialists. Thank you for your story, Katrina. I hope you are well! ♥️ It would be crazy if a surgery would be able to fix my extreme anxiety.
Me too! You saying someone yelling- that always sets it off or if something minor upsets me my heart starts pounding hard and I feel a rush come over me and my body feels like it’s in fight or flight! I always wondered why this happened and what was wrong with me I can’t wait to get tested for this after 10 years of feeling this and symptoms worsening
after developing tinnitus in combination with depression I became a hypochondriac. It's like looking for a needle in a haystack. And I can imagine what you've been through, Katrina.
This was am amazing video, I can't believe all the things you have gone through ! I'm so happy you are healthier and happier now, and I look forward to the next video 💗
I'm sorry you went through so much. Thank you for sharing your story, this will help so many people
1. You’re gorgeous.
2. I’m sorry you had to go through the run around like that. Doctors can be...🙄 don’t even get me started.
3. I feel for you. You’re amazing and so so so strong girl. This has really touched me.
I am 21 and just found out I tested positive for this. My mum just had it removed 6 months ago after 18 months of misdiagnosis! Thank you so much for this video, it’s so nice to know other people going through the same thing and understand ❤️
I feel like we are sisters. I kept screaming ME!!!!! the whole time. I had a pheo removed on my left gland when I was 22 and now I have one on my right gland at 39. It took YEARS for doctors to believe me that something was really wrong with me. The childhood and adult depression, the headaches, being skinny and eating huge portions, hot flashes, the problems with my period and ovarian cysts, being in an out of the hospital with ALL the stomach problems, etc... Eventually I dropped out of college to focus on my health and I was eventually diagnosed with multiple endocrine neoplasia type 2b by my new eye doctor who sent me directly to an endocrinologist after my general practitioner refused to even test my thyroid levels. Anyways, so great to hear your story and to find someone else who understands what I'm going through.
How are u now? Did they remove ur adrenal gland?
Praying for you ❤️🙏🏻
My daughter had a pheochromocytoma in her heart
Amazing video! So sorry that you had to go through this.. About to watch part 2, 3 and 4!!
I had a pheochromosytoma when I was 9 years old.. it had been growing since birth and it was literally a blessing in disguise as to how they found it.
Like my daughter , she had it in her heart
@@suzannesavard1796 phechromosytoma is only in the adrenal gland.
Wow I can't even imagine going through all this for most of your life.. I'm so glad you finally got it taken care of!!
You have been through so much! No one could ever know by looking at you. You look like the picture of carefree, lifelong health and happiness. Thank God you finally, finally got a diagnosis.
My son has so many of the same symptoms and is going through hell (I have too, not as bad). Because pheochromocytoma is rare, I doubt that is the cause - but we will be bringing it up to the doctor next week.
Thank you for being so open and honest about your symptoms and your struggle. It helps so much to have people like you tell the world that these symptoms are caused by something REAL. So many friends just dismiss it as "psychosomatic" or something you are making up to get out of doing work or whatever. THANK YOU!!!
I think I can relate to 95% of the things you said. I'm currently in the process of getting an allergy test done. I'm on a gluten free diet which is helping in the mean time but hasn't completely cured me. I feel the frustration you felt, I'm living it right now. It's just so hard. My family physician doesn't believe me either and just thinks it's a mixture of depression and me being a hypochondriac. Thank you for making this video, it's comforting to know I'm not the only who feels like this.
Thank you for sharing your story! I was recently diagnosed with a pheo. I also have another tumor on my left kidney lymphangioma. My psychiatrist and neurologist are the only doctors who believed me. I had to pay for a full body mri to get a diagnosis. I’ve seen every single specialist, can’t drive, horrible depression, hypertensive episodes with tremors so bad I thought I was having a seizure. I thought I was dying. I kept saying I know something is wrong! Thank goodness I work for Yale and have excellent insurance.
Im glad your ok..im struggling for a diagnosis.. i do have a adrenal gkand 1.5 cm nodule mass how ever . Im suffering from ibs n ulcers
Wow the fact that you went through all of that and lived to tell the tale is amazing. Good for you
I literally have every single symptom. Oh my god.
Darling girl thank you from the bottom of my heart you have just described so many symptoms my son has been experiencing for such a long time. Now having been told that there is the tumour on his kidney we are beginning the path of discovery you have experienced. My mind is on overload so shall replay your diagnosis section before reading further. Sweet blessing honey.
I was 19 years old and a Freshman in college when I had my left adrenal gland removed along with my 14 cm pheo (size of a softball). It was and still is the largest pheo removed by my surgeon at Wake Forest Baptist hospital. I experienced almost the exact same symptoms and went through the same stuff with all the different doctors. With what I went through I think it’s so fascinating to find someone that went through the same thing. Incredibly blessed to still be alive. Glad you are okay as well!
Watching your video just gave me goosebumps. I have been dealing with about 95% of the symptoms that you described! Nobody believes me or thinks it’s anything more than just “trauma” or “depression”. I just had an MRI with contrast to check my pituitary tumor and nothing was found. -Next step (I hope) is checking for an adrenal gland tumor. I am praying and so eager to find an answer to all of this. Thank you SO much for sharing your story, it made me so emotional and also gave me hope. It felt like looking at a mirror because I have been living with that for years now and have always been blamed for it and told to “be more positive” etc. I am now an adult in my mid-late 20’s and I feel like I am getting progressively worse….. I do think I have cushing’s along with this (which SUCKS). Just taking it one step at a time and praying I am close to getting answers.
Update?
I'm glad you're okay I'm happy you figured it all out
Watching this is so eerie. My timeline is almost the exact same as yours. I just realized I am having the heart symptoms and will see a cardiologist tomorrow. My dad died of a NETs cancer when he was 48. I truly believe this is what I have. Like you, I am skinny, but my sister has all of this plus the Cushing's symptoms. I am hoping so hard for a real diagnosis and not just more drugs to manage my symptoms. If you know of any support groups for those not yet diagnosed I would appreciate the tip. All I can find is for people with a diagnosis, which doesn't help with the feeling crazy all the time.
I had all theses symptoms my whole life and it was always put down to anxiety, stress, depression and headaches. But at the beginning of the year after I had a c section because they couldn’t control my blood pressure. My blood pressure was 240/190 and my heart rate was 264bmp and they were worried I was going to have a stroke and I was taken away from my baby of 2 days old and couldn’t see him for 8 days as I was in intensive care. They found a pheocromacytoma 20cm by 18cm and they did a 24 hour urine sample and gave me the diagnosis had open surgery to get it removed! I’m so lucky
and did the symptoms disappear after removal?
Yes
I'm 57 years old, Anxiety since I was 13, Afib since I was 20. BP reading of 200 over 100 in my 20's, seizures, Kidney issues,sleep apnea. Been told I was a diabetic and the diabetes meds almost killed me going into Hypoglycemic shock. I was always told things were in my head. I always felt like I was in a sauna when it was freezing out. I can go on and on. I got stereotyped for being nuts. I wore heart monitors, had more CAT,PET MRI scans than jesus. I have a tumor on my adrenal gland. and no one would listen to me. Your story makes me feel like im not going nuts now. I will learn more on the 21st of October. I hope your well.
how are you now?
I just got diagnosed with this! It has been the scariest thing ever! Thank u for sharing
how are you now?
Wow! Never heard an actual patient that had this diagnosis. I had an endocrinologist test me for this for a couple of years. I did Not have this. I was scheduled for a mastoid ear surgery at 14. I had a blood pressure reading of 260/180 the day of my surgery. It explained the horrendous headaches I had been having and No One believing me. I was a textbook case for this and didn't have it. I am very glad that you finally had a diagnosis and are no better. We are at the mercy of hormonal system..So sorry you had to go through this terrible ordeal.
I understand how it feels to feel sick almost all the time and have a lot of allergies. I have a lot of seasonal allergies and the tests that they did really wasn't many and I was allergic to almost all of the things they tested me for. I feel like I have more, and my immune system is also very weak and I get sick a lot too, but not as much as you went through. My throat always feels like it's trying to close and suffocate and it's a struggle to breathe. What you were going through must've been absolute h e double hockey sticks (I didn't want to curse). I'm really happy you were able to find a way to fix your pain and stuff :)
I'm glad your ok you went through so much and so young and beautiful..you are one tough little lady your a trooper!!
THANK YOU for speaking out about this. They're testing me for paraganglioma now...adrenal Pheochromocytoma ruled out because adrenals are clear.
I'm really scared but seeing you so well is making me feel so much better. You're literally listing all my symptoms but they started around 27 yrs. instead of when I was 7. I'm 41 and just now getting tested.
Sandy DiVa How are you doing? x
ThisCityIsDead Awww thanks for asking! 💗
Honestly, I was devastated when they told me I don't have a paraganglioma last week. The doctors were all saying that they believed that's what was causing my symptoms. When my endo told me this, he said I may have to face the fact that we may never know what's making you sick. I REFUSE. I walked out of there and immediately made appointments with my cardiologist again, a rheumatologist (aka last resort doctor) and a neurologist. Then I went online...the taboo thing to do.
I searched diseases that MIMIC pheochromocytoma and got a lot if differential diagnosis results (I made sure to only read medical papers first).
Now, to understand why certain things caught my eye, you need to know that I'm a survivor of almost 10 years of domestic violence. The last 3 tears of my marriage I was beat almost daily until I could get away. It's important because of CNS disorders. A LOT of them are nerve rested and are triggered by nerve damage from a severe illness or INJURY. All those medical papers? The same symptoms as paraganglioma? POTS Postural Orthastatic Tachycardia Syndrome. I actually heard of this disease before BUT I didn't think to ask doctors about it because I thought you had to faint or at least get dizzy. Turns out, only 35% of POTS patients gets those symptoms. The Nani symptoms POTS patients get, depending on which sub type (there's 4 types), are sweating, tachycardia, high or low BP and HR, muscle weakness and shortness of breath...the main symptoms making me feel horrible,
So I see my cardiologist Tuesday and I'm going to ask him to do a tilt test (they literally tilt you on a table while monitoring vitals to diagnose POTS, THATS IT). If it's positive, if I have pots, my ex would've caused it. I suffered a decade with him and, if I have pots, he will have made me suffer fir the rest if my life because there is no cure for this. Yes, they can manage symptoms, but in severe cases (mine would be since I'm bed ridden most of the time at this point), it continues to be debilitating. That's where the real devastation came in...if it was a paraganglioma, it can be cured with surgery. This can't. So as much as I want a diagnosis, I'm terrifyied that this time, I'll get it. It's fits so well and makes sense because of my history.....well, there's also chronic fatigue syndrome but that prognosis is even worse so I'm nit focusing on that unless CNS comes back negative too.
I'm sure you weren't expecting a book length comment, but just in case you really wanted to know, that's where I'm at right now. Yay, no tumor, but back at square one fir the hundredth time. Again, thank you fir asking, it actually means a LOT that you did 💗💗💗
ThisCityIsDead I got my diagnosis! Hyperadrenic Postural Orthostatic tachycardia Syndrome without syncope....a mouthful I know lol!
Sucks because its incurable but it IS manageable and most get back to a "normal" or close to normal life within 5 years. So there IS hope! Something I haven't had fr a really long time. It's a disease that is cased by your autonomic nervous system malfunction...basically your bodies automatic processes like blood pressure, breathing, heart rate, temperature, perception of temperature, pain and touch, sweating, etc....go HAYWIRE UPON STANDING. It's why it's so debilitating. And because POTS (easy nickname it gives by)!is associated with fainting, a symptom that only affects 30% of POTS patients, a symptom I don't have, I was never tested or suspected if having it. Making diagnose harder, there are 3 subtypes of POTS. The other 2 are the "common" ones and involve LOW blood pressure. Mine causes the opposite (high blood pressure) so it's another reason why it wasn't suspected. But the biggest thing going against me getting diagnosed was doctors don't know about pots. Specialists do, but my primary and endocrinologist had no clue what was wrong after they had tested me fir everything they knew of. It was my cardiologist who figured it out. I now have to rule out sleep apnea (which us a weird one and I know I don't have it) and have a tilt table test to confirm...but I had the lay down to standing test and it came back POSITIVE FOR POTS! Woohoo! How fucked up is it that I'm overjoyed to be told I have an incurable disease?!? Lol! It's just SUCH a RELIF to finally KNOW why I'm so sick, know there IS treatment to lessen or stop symptoms and that I'm not crazy or making it up or exaggerating like some family and friends have said to me.
When you've been sick this long with no answers, you start to believe you might be causing it, it might be in your head, because people keep saying that to you. So to finally have diagnosis feels like I've won a million bucks!
Aren’t you glad you asked?
Hi!! I dont know if you read these comments but I am so glad to have found this story! I had a pheo and it was removed in 2010 (I was 11). But mine was a bit strange as it didnt form in the adrenal gland, which is really rare. I also didnt experience the anxiety (sense of impending doom haha) because my thyroid shut down. When your adrenal gland starts working overtime it also makes your thyroid work overtime which is why so many pheo patients are so skinny, but it also causes anxiety. Luckily (or not really cause now im on thyroid meds) my thyroid corrected by kinda just letting the tumor take its job. The only symptoms i had were horrible migraines, vomiting and sweating. I was missing like 2 days of school every week!! Its just crazy to watch this cause ive never seen anyone with the same tumor and im amazed at how different our stories seem to be. Glad youre doing well now! Xx
edit: one thing i did deal with was the "youre faking it" thing. And one day i was at the nurses office at school and my prior teacher poked his head in and said "if she doesnt have a fever then send her back to class" so i was like... about to vomit but the nurse sent me back. Ugh...
So,..did u get the surgery??
So did u get the surgery??
Are u alright now??
How SCARY! You are such a strong person to NOT listen to your mind!
Thank you for making these videos. I am currently right in the middle of everything you went through. It's hard.. you feel hopeless, like you will never be well. I just wanted to give you insight on one thing you might find interesting. The reason you had alot of the GI distress and especially the diarrhea, during the time you still had the tumor, is because of your Gallbladder not functioning correctly (among multiple other things). The big imbalance of hormones/chemicals in your brain and body, and excessive catecholamines being overproduced because of the tumor made your Gallbladder actually over-perform. It is called Hyperkinetic Biliary Dyskinesia. Because of your tumor, your body was constantly stressed and in fight or flight mode, despite being exhausted and sick. With that condition, the Gallbladder releases all of its bile at inappropriate times and too forcefully, due to the imbalances, bad signals and stress. This causes many of the GI problems. I had my Gallbladder removed for this (not very well known) crippling condition before I realized that it could have been corrected by removing any tumors I have and balancing out the body's hormones and systems again. I am so happy that you are finally in good health, many hugs
Never have I seen a video that perfectly describes what I'm going through right now... Specialist after Specialist can't figure out what's wrong with me... I know what I'm asking about next time. Thank you so much!
Very interesting video! Thanks for sharing. It takes great courage to battle through all those health problems
My son has a similar story. He had a lot of your symptoms, starting at around age 7 or 8. At age 11, with my STRONG direction to doctors, CHOP discovered and removed a tumor from his parathyroid gland. His symptoms IMMEDIATELY ceased!
Glad he is ok!
Wow that’s good you found it and he feels better I have a paraganglioma tumor in my neck and they are going to do a pet scan to see if I have a tumor on my adrenal gland the one in my neck is painful and very large I get heart palpitations at night feel tightening in my chest and sometimes like i can’t breath nights are scary for me and I was never like that before I get very depressed lately never like that before so I no somethings been wrong a few years none of my doctors want to listen to me it’s scary now they’re checking me and no paraganglioma tumor is in my neck but they’re taking their sweet time doing everything super slow they just do t care and my tumor in my neck is pretty big
@@lol4462 hope you're okay! 💖💐
😱 wow
Everything you experienced is exactly like my life. Your symptoms are spot on and I didn't think that those things were symptoms especially the hot flashes and digestive symptoms It terrifies me honestly.
You could just switch me out for you and this has been my entire life.... I'm bawling my eyes out to know that I'm not CRAZY! I finally at the age of 39 decided to call Mayo.... they are helping me! I was supposed to be having surgery on a tumor in my neck until my blood levels came back abnormal.... I've been saying for years I've had something wrong... thank you so much for this! I'm so glad you were able to get help sooner than I did.... I'm afraid I have 2
You are very lucky and mentally strong! Good for you great that you got second opinions 😄
That was a Wonderful way to describe being depressed and needing meds! Very informative video ty!
My jaw hit the floor when you said you could feel your own blood flowing. oMG! You poor thing. That is horrible!
God bless you sweetheart! It kills me that Dr.s love to push meds and say everything is mental. Believe me I’m 42 and I’m still fighting the Dr.s to get the testing I know I need to find out what I already know. I know this video is old but my prayers are with you!
Brilliant video Kat.
P.S. I can hear my blood as well. It's weird for sure. The palpitations, the hot flashes, the rash, the hypertension.. it is all just so overwhelming.
cambria Andersen what type of rash do you have?
What’s your rashes look like?
This helped a lot knowing I can relate to this , thank you ❤️
I had pheochomocytoma as well but mine was caught early on before I felt any of the symptoms. I still had to get an operation. I was scared when I had it at 11 but I can’t imagine having it at 7
Thank you for sharing your symptoms with us :D I’m making my appointment today to get checked out... I’ve been having double vision and halos around lights...tinnitus...high blood pressure...memory loss and I’ve been dropping everything lately so I’m making an appointment Dx
I had a Pheochromocytoma aged 26 again aged 46 and currently aged 70 undergoing tests fr a third .
I've just been diagnosed with pheochoromosomalcytoma. They didnt know what it was from the time I was 11 and I had 2 paraganglioma tumors. I had the anxiety and everything you explained on point. 🙈❤✌ it helps having someone to relate too explain the same condition
How are you doing today in Feb.2020!? Thank you for sharing your story....you helping so many others😍😇🦋🦄🦓🦄🦓🦄🦄🤠🦓💕💜🌹⚘🌷🍀😊🌈🌈
@@mysticbrady
Did You know I have MEN 2A syndrome, and, having the pheochromocytomas sttacks- have for quite awhile, plus the medially thyroid cancer that comes with MEN 2A. As these rare pheochromocytomas.
*MEN 2A Syndrome so rare*
My entire family has MEN 2A, pheochromocytomas, and thyroidectomy for the cancer ..
6 Generations In my family....
I have been in kidney pain for about 6 weeks, Left side abdominal pain, just had a CT, had ultrasound of uterus,, etc...
Tomorrow I see my Dr, and just had two pheochromocytoma attacks in 12 days.
Sometimes, these adrenal tumors are hard to pick up on images ..
Off and on I have had symptoms, and on Cardura since age 29 as having pheo attacks off and on since then now at 57, the left kidney pain, and all her description here is increased in me the past 6 weeks plus....
I have been doing yoga, and journaling, art work, and music to relax...
Tonight, I had a horrible pheochromocytoma attack, had to call paramedics.
So, I see my Dr tomorrow for CT scan report, and I will request a copy for myself to look through, as my mom's pheochromocytoma was missed 3 years Ago...
6 Generations of my family with this genetic disease, so, I pray something is found in CT.
After a whole hour this evening with a
*pheo attack*
*A Classic Attack*
Finally after being hooked up to monitors, and medications, my pheo attack settled down...
Sorry for TMI.....
I prayed God would ease this horrible pheochromocytoma attack, once a hour of it, finally....
I was amazed to see you here in the post!
Hope Your doing well???
God Bless💞
The lip thing, I had five times! Look like a duck and no one knows why... Started with a tiny thing, and got bigger and bigger and... Don't have to say anymore... But guess it happens again!
So frustrating you wasn't believed! So many say the same thing!
Hope someone with the same, learns from this and get help sooner.
Glad you found out. Wish you the best!
You are a gem. Thank you for putting this out there. I was worked up for this twice (24 hour urine catch), and had elevated levels. But I can’t get doctors to do anything. I’m in complete misery 24/7 at this point. I’ve been sick since I was about 7, too. The impending doom is unbearable. I don’t know how to get someone to listen and help me.
Have you followed up with your endocrinologist about the persistent symptoms?
I can’t get my insurance to approve a referral. Plus, corona virus is prohibiting me from getting any appointments now as well. I have a hernia that needs repaired and the surgery center called and said that it was cancelled until further notice. I live in a very rural place. Almost every specialist I need to see is out of network because of it, and my insurance denies on the basis of them out of network. Which makes no sense considering my physical location. But, paperwork. Ugh.
I have all these symptoms too, hang in there
I also have been to 2 specialist about my tumor & I can’t get the drs to do anything either & I have all the symptoms she’s named off,I’ve had mine alil over 10 years that I know of,I feel like my health is getting worse
I was diagnosed yesterday. I am trying to stay positive. Thanks for putting this up. It's been helpful.
Try raw garlic 🧄 only do it once a day go slowly because brain tumors swell before they get smaller! I would suggest getting a frozen headband that you can put around your head for the swelling
Can I ask how it was diagnosed? Best wishes to you!!
Praying for you ❤️🙏🏻
We just found a 4mm nodule on an adrenal gland .... a dr dismissed it..... weeeellllll my back is injured and they found that (1yr later) it’s now 1/2 cm and has a friend 😢😢😢 you are speaking my LIFE!!! We have not come to the conclusion that’s what’s going on !!! Thank you for this candidacy
I just got diagnosed with this and have to have surgery soon within the next two months im blessed they found it but terrified of the surgery process but i have every symptom you are speaking of and always wondered what was wrong with me and why am i like this thank you for sharing this viedo
its nice to not feel crazy, thank you for making this it really helped me, it is very nice to feel heard when all your life youve felt crazy like something is really wrong with your brain and body. Hopefully I can get this fixed
When you have to lie to doctors to get results… I feel you
I am going through something similar right now although I have had a tumour marker blood test (NSE) come back positive so its either this or some form of cancer I think? :( I share almost all of your symptoms though and am so glad you posted this. My anxiety at the moment is pretty crazy and this made me relax because I've just been referred to the Royal Free Hospital in the UK for investigation as I FINALLY got to talk to a nice doctor who listened to me. Did you have trouble with jump scares too, like feeling faint and ill when something makes you jump?
Thank goodness you never gave up! This is what I am like, I HAVE to know. Now I see that's a good thing...
Cannot wait for the next video, as I have no idea what to expect next from my journey at present xxxxxxx most love and best wishes xxxxx
Ells Bells yes, I would frequently get sick after the adrenaline rushes. I'm so sorry you're going through this, but I'm glad your doctors are working on it.
Lol "sense of impending doom" story of my life.
I am absolutely shocked that your medical history sounds exactly the same as my medical history, the tonsillectomy, the allergies, the timeline, the digestive problems, every single thing is exactly the same as what I have gone through. I am 21 and was diagnosed with a pheochromocytoma today. How crazy
Were these terrible symptoms such as the excruciating headaches, anxiety, hot flashes, kidney pain, etc. totally gone after the surgery? In other words were they all related/caused by the tumor?
Thank you for making these videos...I am being tested for Pheochromocytoma right now. Blood pressure issues, ovarian cyst, intestinal issues, headaches, I get sick so easy. I can't believe the ER doctor said...wait a minute..we see you more frequently...I think you have something else going on..let's get these test rolling
How are you feeling?
Never heard of this before today when I was told by a Nephrologist that this is probably causing my resistant high blood pressure, and many other symptoms. Listening to you sounds like my story almost exactly. I am almost relieved to finally have a reason! Going in for blood test and scan soon to be sure.
I feel this sooooo much. I had watched this a while ago and more recently had bloods taken which have shown a rise in levels that could indicate this as my issue. How are you doing now lovely ?
I had a doctor tell me I needed and mri to rule out a tumor on my adrenal gland and my insurance didn’t cover it this was 3 years ago . I’m going back on Monday because I had given up but I really hope I can get it covered this time .
Thank you so much for uploading this. I’ve been dealing with similar symptoms for years now and I just got diagnosed with pheochromasarcoma at age 33
how are you now?
@@andrewkraynoff2448 I actually had my left adrenal gland completely taken out in March and i can honestly say it was a complete success. I feel great now. I am a Quadriplegic though and I have been for 19 years so my situation is even more complicated but everything went really smooth, I was blessed
what are the names of the anti-seizure and an it-depressant that wokred for you? im on a combo of those two haha
I am in tears watching your video. I too have had the same symptoms and a recent 24 hr urine collection test (with acid...so the smell was horrendous) revealed my epinephrine and norepinephrine levels are through the roof. I had tonsilitis for the first 7 years of my life-they would swell to the size of adult swollen tonsils-and I was just a child. I have an appointment on Tuesday with my new doctor. He's new because we moved to a different province. At my last appointment, I told him that my sweating is getting out of hand, the pain in my kidneys is excruciating, my joints and muscles are killing me...and that I'm not making this up. I said I'm not looking for an illness because it sounds nice, I want answers. He said he believed me, which made me cry. Bottom line is, the report from all the tests he sent me for mentioned pheochromocytoma. Your video REALLY hits home! Thank you so much for sharing!
Bro reading your story is exactly the same as mine, how you getting on man?
@@louiefamouswarrior8432 I've had 100s of tests done besides the 24-urine collection. All normal. I've had 2 PET scans done. Normal. One even mentioned my uterus (wtf?) My blood pressure is still controlled with 6 medications and my epinepherine/ norepinepherine are still high. They are doing nothing.
I just started having these attacks and symptoms April this year. I’ve had extreme anxiety and depression since I was 11 years old and have an extremely low sex drive. I also have a lot of stomach issues and celiac disease. I’m 20 years old now and was recently diagnosed with adrenal fatigue and symptoms of POTS syndrome but trying to figure out if I have Pheo. Since the attack in April, I’ve been having these attacks monthly waking up with heart palpitations, shakiness, headaches and confusion. I went to a cardiologist, assuming it was arrhythmia but it wasn’t. My parents keep assuring me it’s just anxiety and panic attacks but it doesn’t feel like it. Every time I’ve been to the hospital, they’re concerned with my 150 bpm+ heart rate but discharge me since the IV fluids help it go down a bit. I get restless and beg my parents to take me to the hospital when I’m in crisis during these attacks, but they just tell me I’m having anxiety and I’m exhausted. I’m having so many uncomfortable and painful symptoms but it feels like no one believes me and I don’t know how to test for this tumor, if I have it.
Hi, great video. Do you remember if you had changes in the circulation to your skin? Like the blood away from the skin, cold pale feet?
Hello! Thank you for sharing. I’m currently going through this and have a few questions for you: Where did you get your operation done? Did you research your doctors beforehand? I’ve only been to the specialists in my network in Los Angeles and I’m wondering if I should be looking elsewhere and/or getting a second opinion. Would love to discuss this further if possible!
At the time, I was told that my two options in the country were Mayo Clinic, and Stanford. I grew up 35 minutes from Stanford, so that was my choice. 100% the Dream Team.
"have you tried yoga?" I'm going to die bc I didn't do enough yoga.
I have pheo tumors too I but mine was caught early cause my family all have them and knew what to do it is nice to see someone that knows the pain of dealing with the stupid smart people ( doctors )
Thanks for this video
Been there as of late 6 years they found on Cat with iodine they missed but my Endocrinologists found by accident and yes 4 million in test and when I mentioned testing for heavy metals toxcity, they tried to lick me up and psyche med me, I walked out of office, but I've must had this a long while as decade ago ran thru the psyche cycle.
Thank God for mircles!
Wow I have had all your same symptoms and more. I have lupus and when my thyroid was all hyper I was sent to an endocrinologist. He did all kinds of special scans and lab tests thinking I had a Phoe but never found one. I still have weird symptoms all the time but they just say it’s lupus.
I injured my knee while playing a basketball game in college. I ended up having an ACL reconstruction. A week later I collapsed during an appointment at the hospital while I was getting my stitches removed. I stayed for a week in the hospital due to the pulmonary embolism. When they scanned my lungs and heart for blood clots, they accidentally scanned my adrenal glands as well, thus showing the tumors. I had large pheochromocytoma tumors in both adrenals. The doctors stated I was producing upwards of 40x more adrenaline than normal. They removed and tested both adrenals, and they came back as cancerous. A few months later I complained I still wasn't feeling right. So after more testing, it was found I had thyroid cancer. I ended up having my thyroid removed as well.
Well... that's my story. Cheers.
Im really sorry. You definitely have a version of MEN SYNDROME. Please ask your doctor to check you.
@@camillebambi6449 Yes, it was found to be Men2.
@@TheDavinci314 Im sorry :( At least now they will be able to keep tabs on you and thoroughly look at your blood tests and any aches or pains you have from now on. Most people don't find out until it is too late.
@@camillebambi6449besides developing diabetes and usually ending up in the hospital every year due to catching some sort of flu. Everything is back to the way it was. I lift weights 4 days a week, run 5 to 10 miles 3 times a week, play basketball a few times a week. I no longer take metformin due to my physical activities and proper eating habits. I do however get a lot more muscle cramps in various parts of my body after exercise, usually in the abdominals, so I always have powerade sweetened with stevia on hand. I also have a lower tolerance to hot and cold, I sweat a lot more in the summer months. I also crave sour foods a lot more (eg lemons and limes). Lol
@@TheDavinci314 The fact that you are able to be so active is amazing. So happy for you! And good job eliminating your metformin!!!
I think I have a tumour but wanted to hear your story first. Everything is the same especially the tonsillitis. I suddenly developer an autoimmune disease which has not improved even with treatment. I did a urine hormone test and found I am severely fatigued. I also have the palpitations and now insomnia. I am so nervous to ask doctors for help because I know they are so busy and will tell me I am crazy
You are so BRAVE!!!!!!!!!!!!!!!!!!!!!!!!!!!! 💪🏻💪🏻
I found a pretty large tumor that was missed on my CT scan and you have just told me my own story, even as far back as childhood. I've been complaining that my kidneys hurt for a year. I'm on 6MG of Xanax a day, baseline. When I don't have insomnia, I sleep 22 hours a day.
I have a $500 a month inhaler and I'm on 3 different antihistamines.
Holy shit.
I found it today. Years of this shit.
" i had started doing allergy shot therapy because my immune system was so weak i became allergic to everything"
I'm going through something very similar right now, you give me hope
Michelle Warwick it works! It sucks...but it works!
Did you find out why you became allergic to everything?
Thank you for the time you put into this video. It has been extremely validating for me. I will watch #2 when I get a chance. I hope you are doing well.
How you doing now? Hope you feel better. Never had a brain tumor before but know how scary it is. I been very stressed out lately a long with a cold. I feel stress cause colds and viruses illnes. My immune system feels down weak from the stress. I didn't think stress cuases illnes ☹ it sad that the doctors didn't believe you thanks for shearing your story.
Getting a cetacholamine test this week.. pretty sure I've always had one since I was 19. Endless panic attacks every day for 10 years now. Was in the cardiac ICU for 3 days for NSVT. My cardiologist suggested I could have an adrenal problem
I have horrible anxiety and panic attacks
My heart Is always pounding my vision actually pulses I can feel my heart heart beat in my whole body. I get palpitations, I get arrhythmias, I get really cold all the time for no reason, I sweat for no reason, i get hot flashes, canker sores (4 in my mouth rn while typing this) I have depression, chronic fatigue, when I sleep I can sleep for a whole day. Sometimes I wake up with panic attacks and rush to the hospital, chest pains, severe headaches, nausea, trouble breathing, pins and needles, orthostatic hypotension, I pee alot, constipation, lower back pain, and anything that excites me makes me shake uncontrollably.. oh and i went bald. And nobody in my family is bald
All fhe symptoms you mention I'm going through it right now... And I feel miserable
How are you doing?… have been checked for an adrenal tumor(by way of a CT scan of adrenals)?
How are you now
@@ivelisehighr I'm fine I was demonically possesed the first time I ever prayed in my life all my anxiety panic attacks and heart palpitations dissapeared.
Theres a church right next to my house so eventually I put 2 and 2 together and realized it was keeping me inside and away from the church
@@AMRsti93 good to know you are fine , also calming for me because I'm going to test for pheochromocytoma next week and I'm scared because i have all of the symptoms.
Holy sh*t i’m glad i found your video. I have had horrible fatigue for 9 years and went through the same thing with docs and they always were lazy wanting to give me antidepressants. I had terrible stomach issues when i was pregnant and that’s when they found the pheo. I’m having an adrenalectomy. I also have that doom feeling and palpitations and weight gain which had been insane
This video helped me understand my symptoms that i didnt know were related to this adrenal tumor. I was super shocked when you said you could here your blood flowing through your jugular vein. I hear it in my right ear. Sounds like a wind tunnel. Outside the female only symptoms i have nearly all of the ones you described.
You really went through a lot!!!!!
Uhhh... this sounds exactly like me? Where do I go to find out if I have this sort of tumor? I have been feeling so horrible for so many years.
Thank you so much for sharing your story. I was just informed I have a mass on my adrenal gland and I have been experiencing nearly everything you have. Now I have some hope and some pointers. Thank you for you positive light... ♡♡♡♡
Were you tested for mast cell activation syndrome? I totally understand the stomach issues. After my car accident i went from ibs w const. To i can't keep anything in me at all. I have gotten hot flashes since i was a kid really flushed face and everyone kept telling me I had rosacea and I kept telling them no.... Definitely not.
i just had my pheochromoctoma tumor surgery last month, i felt like i was given second chance to have a healthy body as blood pressure and blood glucose had got back to normal reading
Pei Ing Ing I believe I have it too , but my doctor is taking his sweet time to diagnose me what did your doctor do?
@@sheenasanchez5921 did you get a diagnosis yet?
ezrsaidndone 1 I will be getting the results tomorrow
@@sheenasanchez5921 I hope it's good. I went to the doctor about a lump in my jawline and she wasn't concerned about it. My bloodwork came back good but I have head pains and body aches sometimes. Do you ever get headaches only on one side or area of your head?
ezrsaidndone 1 I get headaches everyday I feel like I hit myself with a wall that’s how bad it is , and I went to a specialist because my regular doctor did a blood work and nothing came up
Did you have resistive high blood pressure??
I have all these symptoms but I also suffer from resistive BP. I have had quite a few hypertensive crisis’ and the highest my BP got was 245/143.
Currently all of my blood work is clear, stool sample and urine all clear.
Lately I have feelings of I’m about to faint when I try to go to sleep, or just randomly throughout the day. I have a CPAP for my sleep apnea and now my BP is doing good and I sleep really good but I still feel drained and tired ALL THE TIME!
I’m really leaning toward having Pheo. 😩
Everything your saying is me now doing testing for this now I’m glad you posted this
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Praying for you 🙏🏻❤️
I can understand your doctor thinking it was psychosomatic based on the fact that you struggled with mental illness and your symptoms were so global. However, what is so frustrating about that to me is that psychosomatic symptoms can absolutely be caused by the depression and anxiety that come from chronic illness. Up to that point you had been sick for so long that yeah, in all likelihood some of the things you were experiencing probably were psychosomatic because you were miserable. I wish your physician understood that both can exist at the same time. Mental illness and chronic illness can be so very intertwined.
Patty Arenson I wish my doctor realized the mental illness was caused by the tumor. Would have saved me a...well, a childhood.
when you heard your blood, that was like blood pressure rising probably I have that many times esp when my random sinuses headaches appear. I have weird itching around my pelvis that has turned like the color of a bruise b/c of itching(but it doesn't hurt) and some of it has begun to 'scab'. My GYN wants to see me for a possible ovarian cancer but who knows what is goin on.
This is amazing. I am being tested for this currently. For me it started at 12. I have the tinnitus I do not know if I want the answer to be this here, but I need an answer. Oh my, I had the same thing on my upper lip. It felt like a pea not a marble. I thought it was going to burst like a pimple but it slowly shrunk. Oh no, and the sleeping thing,exactly.
Patients with sporadic pheochromocytoma present at a mean age of approximately 44 years, and those with a genetic predisposition present at about 25 years of age. [1] Annual incidence is reported to be 2-8 per million and prevalence
I’ve just been diagnosed with an adrenal tumour I relate to the feeling you had they found it as I got pneumonia 2 weeks ago after a ct scan I’m waiting now to see if it cancer . Thanks for sharing
Roman linley how are you? Did you ever got tested for 17 oh progesterone?
Praying for you ❤️🙏🏻
Going in to see My Endocrinologist to see what bloodwork & 24 hour Urine collection- have the tumor on my left Adrenal Gland…scared - I also have Lupus… 😢 great story! Love it
best wishes and healthy life and hope everything alright with you