Kari's Story
Vložit
- čas přidán 8. 11. 2016
- Kari Dahl was interviewed by her husband for NET Cancer Day 2016. This is her unedited submission.
Follow Kari's continuing journey with her diagnosis via her blog:
karimdahl.com/
To learn more about pheochromocytomas/paragangliomas, to find out how you can donate to research efforts, or to share your story. please visit us online:
www.pheoparaproject.org
www.pheoparatroopers.org
For information on NET Cancer Day:
www.netcancerday.org
Content belongs solely to the participant and the Pheo Para Project. This recording may not be used, in whole or in part, without written permission from both parties.
I had a right pheo removed in March of 2020. I started getting sick again last October but i didn't have insurance. I am insured now and being tested trying to get a ct scan approval. I have been seeing my bp reach 175/130 for the last week. These things are no joke, Praying i don't have a second.
Thank you for sharing and I greatly appreciate the reminder to be your own advocate...you know your body! I really needed to hear that.
Thank you for sharing your story. My mom is going through the process of being diagnosed with this. She luckily had one of her “attacks” in front of her doctor and they think she has Pheo. I struggle with anxiety myself and I’m worried i could have it as well. Hearing your story helped me understand even more. Thank you.
Thanks for your story. I have recently been having all these issues and the doctor thinks this is what I might have. It is the most terrible feeling I've ever felt. I was prescribed alpha blocker today and I did my 24 hour urine test yesterday. I'm a recovered heroin addict and this is more awful than detoxing from the worst addiction of my life. I feel like I'm going to die from about 4pm to about 9 pm. Dysphoria, high adrenaline, panic, lower back pain, and extreme restless feeling. Hardest month of my life. I have to stay strong.
Praying for you....
I have pheo attacks, terrible....
I just had another round of images...
I hope it's found, because pheos can hide and be small, and cause a person to be very sick
I have MEN 2A too
You stay strong 🙏
Thanks for sharing. Good for you to do your research, unlike your GP. That's scary that you know more than your doctor. Mine was found in 2014 on a CT scan for lower back pain. The NP that found it alerted me about it and ordered a biopsy. That was a BAD idea. I had the biopsy, but fortunately didn't have additional issues as a result. My surgeon said the biopsy could have caused the pheo to do more crazy things. Mine was removed in July of 2014, 13cm, and i feel blessed they got it before it caused more issues. Thank you for sharing your story. What a blessing to have them removed. Sorry for your struggles, but it sounds like you've got very supportive family...a key through any challenge like this. Good luck to you.
The doctors don't feel I have pĥeo but I don't agree and have gone through alot of test. They know I have adrenal tumors, but according to the doctor they are "too small " to cause problems
Kari thank you for sharing your story. I'm glad you and your son are okay. My daughter and I are going through the classic triad intermittently. I have night sweats as well and we both suffer from mood swings, anxiety, and depression. Our lab work came back normal and our doctor thinks it's all in our head or just depression in general. I keep telling her how is it that both of us have the same symptoms, just at different times smh. I feel bad I may have passed it along to my daughter since it is hereditary:(. We're getting the proper tests and will see an Endocrinologist for a proper diagnosis, I hope. The more we raise awareness, the more lives can be saved. Wishing you and your family great health and blessings!
Thank you for sharing.
Thanks for sharing. God bless you and your family.
Just because something is rare does not mean it is impossible. When a physician shuts you down and says "it is way too rare", then another physician should be utilized. It is terrible that doctors do that and patients have to fight so hard for themselves.
Having the same exact things happening to me, 48, male. After chasing my high Blood Pressure for this past year, put into hospital twice as they thought i was having heart attack or would stroke with BP levels 282/134, put me on 8 BP meds and can't keep it down, anxiety issues, headaches, weight loss, finally my doctor called me at home late last evening. All the blood test are tomorrow morning, 24 hr urine after that. Fingers crossed. Not sure where this road leads.
Update??
@@ELBrown213 Nothing medically wrong. Heart as strong as they come. Began looking at home. Stopped drinking all tap water. Everything must go through a Berkey filter. Stop caffeine intake. Weaned off of all blood pressure & anxiety meds. Took weeks. Cut phone time. Cut laptop time. Never use either if they are plugged in. If I do my heart begins to tingle. The big one, we put our wifi router into a metal box we purchased to block out EMF. Put one outside on our meter, right next to our bedroom. Dog was sick too and recovered. EMF poisoning. I recovered. Explained all of this to my doctor as I made a recovery, both my general doc and cardiologist. They dismissed it as not the issue. They said since no studies on EMF were peer reviewed they wouldn't even look into it. No kidding. They aren't paid to heal, they are paid to "practice" medicines. They were PISSED I was off the medications. ANGRY. Even got a call and chewed out for it. I hung up. Haven't been back and won't. No covid shots either. Period.
Hi, I have had MEN 2/A since 1985.
My medullary thyroid cancer has come back 3 times.
I have had pheo symptoms since 1994. Drs cannot find it, just having symptoms increasing for pheos.
Abdomen pain, 3 pheo attacks in 2 weeks.
It's a horrible feeling, the pheo attacks. ...
My Drs talking about taking my anxiety meds away...I told her Noooo, this protects me to cool off pheo attacks.
In Florida these new laws with meds is getting outrageous, and I am on a tiny dose twice a day for anxiety meds.
I have been trying to cut back, it's back fired, paramedics came 2 days ago....
I have AFib, high BP, and the sudden, surges of Adrenaline.... Now left abdomen pain, and this last pheo attack really was awful.
I just had ultrasound, CT.
See Drs soon.
I want to see the reports myself in my hands...
I know darn well it's a pheo, but, as my endocrinologist told me long ago, some pheos hide and are so tiny, but can make a person sick.
I think this time something will be found.... I cannot take much more of this..
My Dr best not take my anxiety meds away....
I will be showering her my heart strip from paramedics.
I should went to the hospital the other day, but, declined, as my pheo attack cooled off..
I am being so careful until I see my Drs soon
FYI~~
*My Family Helped Create* *The RET Proto*
*oncogene test*
*In 1995*
I have 6 Generations of MEN 2A.
The mutation our family has is very dominant for us all the eventually have pheos.
Many of my family has had pheos removed, here me, having symptoms more than everyone it's been rough to locate a pheo.
Thank You for your story.
We Have a book that a group of us put together in a support group For Medullary Thyroid Cancer in 2015.
The book is on Amazon
It's called~
*After The Diagnosis* *Medullary Thyroid Cancer*
All money goes to Thyroid Cancer Research.
Not trying to sell anything, but, take a look on Amazon, my story is a Chapter named 5 Generations, at the time, we only knew of 5 Generations of MEN 2A.
God Bless You, thankfully you made it through those pheochromocytomas....
Take it easy 🙏💞
I was just diagnosed with this and I don't believe it. My familt thinks I'm bipolar, and it's not a health issue. 😓
I lived in Washington for 36 years.. born and raised.
We're here for you! How can we help?
Is it normal to feel depressed with these when you're doing too much?
It can be. Different people respond differently. Sometimes, a "feeling of impending doom" is reported. That could mean depression. Do you have a good, knowledgeable medical team, and what is your treatment plan?
Pheo Para Project I went to a consult at the Mayo Clinic, but can't go further with no insurance.
No money for insurance, no health care.
I'm pretty sure the first doctor didn't even give me a diagnosis. This was a possible diagnosis, but I won't ever find out now. I'm 40.. never have had health care unless we decide to slack on paying bills and waste money to go get more blood tests that come out abnormal, and i can't pay for the tests anymore we've spent too much.
I hope and pray I don't have this, because I can't do anything else.
I've had symptoms for 10 years.
@@Jkstolz
Contact the Obama care act for insurance...
I got diagnosed with chronic kidney disease but Ive been having bad anxiety and stress. I feel like my heart is pounding out of my chest. I also have verry bad sleep. Hopefully I will get the treatment I need someday.😅
This story sounds so familiar. You really are a trooper. I'm currently under investigation for pheo/carcinoid :( after years of endocrine problems, hyperparathyroidsm. X
How did it go?, I just had parathyroid surgery
@@Waterlilys. I hope your surgery went well and you are making a good recovery. Me.... still inconclusive. It sucks. Only 33 and no answers. All the features of MEN1 and negative genetic test.
ElizzoGypsy I think I may have this but they put me on propranolol so I don’t really get the high heart rate but what’s MEN1??
@@Waterlilys. I can't take propranolol sadly due to asthma. I wish I could. MEN1 is a genetic syndrome characterised by tumours in multiple endocrine glands. One of the main features are parathyroid adenomas. Google and check it out, so many docs aren't aware of the disease
Kari thank you for sharing this. I was wondering how was the surgery for the adrenal gland removal? I'm facing the same thing and the information online is somewhat contradictory. Its either terrifying or "oh no its an easy surgery." I was curious what your experience was?
It was a very scary surgery, to be sure. It’s not fun-but because it’d taken so long to diagnose, my surgery was open and not performed laparoscopically, which made it more difficult to recover from. That said, it depends on your particular situation. My biggest advice is be sure you find a surgeon with as much experience as possible with pheo surgery. Be blunt and ask how many of them he or she has performed.
they just found a 1.3cm tumor on my right adrenal. Been having near constant anxiety no panic attacks. But the anxiety is through the roof.
Currently going through most of the symptoms I have hypothyroidism, anxiety so bad I have panic attacks/ can never leave the bathroom. My 24 hr urine had abnormal amounts of hormones, so I’m waiting for new ct scan.
Going though this with our 26 yr old daughter now. First visit to the FP resulted in the typical suggestion that this was a young woman upset about Covid,so an anxiolytic was suggested. She’d been having limb trembling every day for months, arrhythmias including SVT, waves of adrenaline rushes,panic attacks, paroxysmal diastolic HTN, frequent headaches, shortness of breath and now chest pain. Awful. Luckily I am a persistent RN and have basically made all care suggestions so far- isn’t that pathetic? Our family doctor is clearly humouring me. Even knowing my husband’s brother has MEN 1 hasn’t impressed her. I will not give up,ever. Waiting on urine metanephrine results.
Hi how is your daughter now, I am waiting on metanephrine results, my symptoms are so extreme there has to be something wrong, adrenaline rushes, dried up skin, palpitations, tremors, nausea and more.
@@denisem6221 Hi, thanks for asking,all tests were negative. She’s been tremoring every waking moment since last July. Still having rushes but not as strong and no ultra fast heart rate lately. Super frustrating to have no answers. It was really intense for months- but FP just threw sedatives at her. That’s been the sum total of her response. Unsaid : ‘Frantic young woman worried about Covid.’ Please.
If that’s the case, it’s without precedence in her life.
@@denisem6221 I hope you get to the bottom of your issue. Did they test urine or blood... or both?
@@jennifer97363 Hi, did your daughter had a CT scan? So many times things are missed for so long. I have been suffering with unbearable symptoms for two months now. They ordered blood metanephrine, urine cortisol, saliva cortisol, blood cortisol, dhea and based on results which I hope to know tomorrow I will have a CT scan.
@Lisa Marie i hope you know soon, not knowing is the worse. I am conforted to know I am not the only one going through this. It feels so unreal sometimes.
Thanks for sharing. How long did it take for you to withdrawal from the anxiety meds?
too rare to be a pheo.. but they are real!.. advocating for my health... palor high bp. heart racing. . the sweating is unreal...trembling .incoherent... x