#AwareAboutRare
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- Опубліковано 30 вер 2019
- Meet Kristi. At the age of 12 her mom noticed she started to pick up a lot of unexplained weight. After 3 years and undergoing many tests she was diagnosed with Cushing Syndrome. This is her story.
For more information visit www.rarediseases.co.za
"I literally wanted something to be wrong with me. Because you don't understand why you gain all of this weight, you just want an answer." I feel this. I have these same thoughts and feel like a hypochondriac. I have been gaining a lot of weight with no explained reason. I have been pleading to my doctors for the last few years that I felt something was off. My last doctor just kept reiterating that I need to just eat right and exercise like I haven't been doing that already. It sucks to feel like you're crazy. Sorry to hear you have migraines post-op. Hopefully it continues to get better! It's people like you that share your story that keep me fighting for an answer.
Best to see an endocrinologist and ask them to test!!!
You need a very good endocrinologist, one that perhaps writes articles … write to the NIH and ask about an approved endo doc.You need to have a series of tests done… some simple some more involved. People with difficult diseases have to keep looking for docs that are serious scientist types. Look up Primary Aldosteronism … read, read, read, search and search . Many people wind up diagnosing themselves and become an advocate for themselves till they are taken seriously.
How are you doing now?
I had adrenal cushing's when I was 6 until I was 18. Then I had surgery to remove it but they left part of my gland and now I'm having symptoms and signs all over again with some liver fibrosis. It's hard when not many people understand or can relate.
Are they checking you for primary aldosteronism ?
Why did they left part of your gland,dear
It's by chance i found Kirsti's video. I'm about to be placed on the street. A woman who was one of the top 10% earners in this country. I've been diagnosed with cushings by Prof Wing and Prof Paget and my story goes a bit further. I have through research found that the abuse I have experienced since being a baby has left me with diagnosed CPTSD as well. At Kirsti got the chance to have her tumour removed. I still have mine. No medical aid, no one listens, so now I live with migraines and the excessive tiredness.
But why nobody is listening to you, what does the endocrinologist says
Brave girl ❤️
Thank you so much!
@@kristikirstein9040 My doc thinks that I have Cushing disease. I have a few questions that you may be able to answer. 1)Did yuo also have streia and a buffalo hump? 2) Did you have any memory issues before or after op. 3) How long did it take you before you could resume normal life post-op?
@@kristikirstein9040 Dear it literally made me cry, most have it on their adrenal gland, but you had a tumour, but it is heartbreaking to see, that you are still going through it and it never goes away, how is it possible to have a life? Like this
do you have a weight change between highs and lows
Good
I had pituitary surgery in 2018 . I got 40% better but still having symptoms. Soon I will be starting the istruisa drug. Hopefully it finally cures me.
How are you now?
@@Gabilai92 istruisa wasn't doing much at 1st but by month 2 it started to really kick in. So far I lost 8lbs out of 50lbs that I gained and symptoms are going away . I also was placed on metformin and that seems to work great with the medication. Thank you for asking! How are you?
@@DUNEYREAGENT Went to the ER today because of my migraines…that was n to fun… whenever i get the severe attacks i always think “ Well its been nice” -that’s part of the doom and gloom feeling of migraines.. But i did get a lot of testing done from the docs, so lets see what they say. I am glad the meds are working for you, and they always do. I don’t understand at times, Why he have to suffer. Can’t we just enjoy life?!?!
@@Gabilai92 I'm sorry to hear about the ER. I'm sure better days are coming for all of us! In the near future I would not be surprised if they finally have technology that will cure us completely. Hang in there 🙏
@@DUNEYREAGENT THANK YOU!!! I do believe in the science and technology. Be well my friend!
Ya operaron a mi esposa glándula suprerenal derecha.... ojalá no sea maligno
Do you mean adrenal gland?… is she being tested for hyperaldosterism, primary aldosteronism?
@@speaktruth9313 creo que sí.... salió benigno.gracis a Dios