This has been a highly requested video. In this video I will be updating you all on my Cushing's Journey.
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JustMe&B They were able to get all of it. Unfortunately I lost all of my hormones and developed Panhypopituitarism. I hope you don't get it, but if you do there is a really good support group on Facebook.
my daughter is having her tumor remove on april 6th she lost awhole bunch of hair and she has those stripes on her arms will they go away how long were you in the hospital my daughter tumor is a size of a walnut well they remove all of it!!!
Hi, I'm wondering do you get headaches or food related headaches? Or have pre-existing allergies gotten worse since having Cushing's? And have you written about your condition in a blog? Thanks for any answers.
I have cushings from all the steroids they've put me on for my allergic reactions. I feel the pain of the large stretch marks and the weight gain. I've gained 50 lbs keep your head up we can't help it!
I have been going to the doctor for almost two years now and in the last few months Cushing's came up as a possible answer to all my questions. I became knowledgeable about the disease and I believe I have Cushing's. Does Cushing's take a long time to diagnose? I don't like being in the dark when it comes to my health.
Really happy I came across your channel! I will be getting my results on if I have cortisol overproduction next week. You have a positive attitude which I can relate too! I am trying to not let the ups and downs get to me and push through. Thank you for sharing! God Bless!
this video is extremely helpful, thanks! I have a question, I've got some symptoms of Cushing's, but only a few. I don't have any stretch marks, high blood pressure, acne. Does it mean that I don't have this syndrome or it is possible that some of the symptoms don't appear? Can you tell me what lab tests should I do? I had a test with dexamethasone, or something like that. My cortisol level was very low, so that must mean that dexamethasone suppressed it. Should I still be afraid though the result of my test was negative? Or maybe everything is ok?
omg so weird, I had brain surgery for this exactly a day after you uploaded this. i had cushings for a while also and many other problems caused by my pituitary tumor (including really deep stretch marks on back and thighs) :( but now I'm better and I use 'Cicatricure' on my stretch marks and they're almost gone, i recommend trying it :)
Love, love, love your positive attitude! I too have Cushing's disease, with a small tumor on my pituitary gland. I gained 130 lbs in less than 3 years despite eating fairly healthy and being active. I also have a lot of the same symptoms as you, but the best thing is to stay positive and knowing that doctors are trying to do their best at providing the care that we all need! I'm waiting for the sinus sampling since they think that will provide the best results in removing the tumor during surgery and ensuring that I won't have to go in for a second surgery. The disease may be a horrible and rare thing, but if we all just stay positive and look on the bright side knowing that there are ways to deal and manage it then we can all get through it! :)
Seen your link on my cushings link I have on Facebook
I know what your going through too, I was finally diagnosed with Cushing disease too last January and since then my life has been a world wind of in and out of hospital visits. They said that I'd had it for over ten years and hasn't seen a case like me before, I had a very enlarged tumour on my piturity gland that had conclaved in its self which was wrapped around my optic nearves and arteries, they could not remove all as it was too dangerous that was last September then in the November I had my adrenal glands removed which were four and five time the normal size, since then I have lost three stones my appetite has also changed. I haven't even tried to loose it too, hoping to hit the gym again to help support my muscles. Like you I have too many symptom to say that since I was in my teens kept going back and forth to the doctors for. I've just had my mask made for my radiotherapy and at the end of the week I start my five week radiotherapy and start leading what you call a normal life again. I'm going to have to have regular MRI / ct scans and scrape out in the future and closely monitored
The ops are not that bad, I was surprised in how quick I recovered, put I had a lot more aches and pain which I'm not full recovered from. Like you I sad I have had it for years and put up with it then so it's not stopping me now, I'm going to do things I wanted to do in my twenties which I got sidetracked and but on hold till by my angels from above knew when the time was right, for me to fulfil my dreams xx
I have my good and bad days but I stay strong for my family and friends and for my dreams as I know I'll never be able to work in day nurseries agains. Xx
hi! i have cushing desease too i had my surgery on june last year i understand what you are going thruoght. It is not easy... i hope you get better soon, by the way it is nice from your husband to be with you. It is very important to have someone with you. Let me tell you something about my symptoms, as you mentioned I also had does moments where got angry without a reason then I will cry like crazy but as you said it was because of the hormonal changes other thing that happened to me is that I had seizures i don`t know if that is happening to you on top of that I had hallucinations panic attacks and many other symptoms. After I had my surgery things are changing gradually, I feel better no more panic attacks I haven`t have any seizure so far but I still take my medicine for the seizures. One thing I can tell you is follow your doctors` directions and don`t miss any appointment. once againg you look great!!!!
Adriana, which surgery did you have and where did you have your procedure done? I have an 11x11x12 pituitary tumor with cushings and I'm trying to decide where to have this procedure done. How was your recovery and how long after surgery?
wow you are so strong and positive! im so sorry you are faced with this disease but happy that its not something worse! This was such a great video, I didnt know much about it until this. Thank you for sharing!
Aww love ya hun..you are handling this so well...I think I would be a mess!! Keeping a positive attitude is the only way to go..Thank you for sharing your life and your story..you are a true inspiration to so many!! Love you mama;) xoxxoxoxoxox
Love you, Hayley! You're right- stay positive. We don't have control over certain things. My brother had brain surgery about 13 years ago to remove something that could kill him and it was scary but we prayed a lot and it was a successful surgery. xXOo Carol
Whats the deal with the sinus sampling test? Are theyre really risk factors? I was supposed to have that done, still may be, hiopefully soon. Ive had mri's on both the ehad and adrenal area or whatever and they couldnt see nothing but my family doctor said liek you said there could be a small tumpour in the brain that wont show up. does this test for sure see if its there or not? I mean ive never taken steroids or anything, just logically thinking it has to be there. And good luck with everythin
hi again. i just suscribed to your channel.( Im Danny Miller from the otehr cushings video, that was my brothers account) Sorry to hear that its still not cured yet, but i cant believe how positive you are and happy and everything. My doctors have me on suicide watch instead of trying to focus on the things that are making me want to kill myself in the fiurst place, including the cushings symptoms which is a big contributor. I got a question, were kind of in a similar situation...
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