However, the reason we have this knowledge is because we immersed ourselves into the medical intricacies of Cushing’s (out of necessity). Facebook wasn’t around, but MaryO’s site was — and it was crammed full of information. While the forums don’t satisfy the current need for instant gratification, while waiting for answers to questions we spent time looking through past questions. We searched the forums for others who had similar questions to ours. In the process, we learned things that we didn’t even know we needed to ask! For instance, someone might ask a question about the dex test. Another member answers but also talks about the IPSS. That led to a search on that test, and that led to and search on doctors proficient in the procedure. It also led to some “horror” stories — which kept some of us out of harm’s way.

I can’t stress enough how important it is to have this kind of learning process if you are dealing with Cushing’s. You have to be fully invested in your own recovery, and one of the ways to do that is to become an expert. You can’t do that here. You can get some information, you can get some hugs and warm fuzzies, but you simply cannot learn enough on this FB forum to get yourself well.

Do yourself a favor. Go register for MaryO’s site (it’s free). Make a few posts so you will have full privileges (the search feature primarily). Play around with the advanced search feature. Go to the testing section and just scroll through the different threads. Pull up a couple of interest and skim them. Same for the treatment section. And the recovery section. Before you know it you will be very comfortable with the site and you will be soaking up information that you didn’t even realize you needed to know.

We will still be here to help you through … but know that, for myself, I will often not answer your question directly but will give you a link to the specific forum that addresses your issue. It’s not that I don’t want you to have a quick answer, but I want you to address the issue in depth so you will really understand the “whys” of the answer!

(On Facebook)

Il y a 19 ans, je recevais le diagnostique de la maladie de Cushing et vivait la première de 3 chirurgies à l’hypophyse, au cerveau, pour enlever une tumeur produisant le ACTH. Les deux autres chirurgies ont eu lieu au NIH aux É-U en mai 2002. Merci à Mary Kelly O’Connor pour tout ce qu’elle fait et pour sa visite lors de mon séjour au NIH (très touchant). Depuis 2002, je n’ai plus le Cushing mais vit avec une maladie chronique: l’hypopituitarisme qui pose un défi quant à sa gestion. Malgré tout, j’essaie de vivre au jour le jour en faisant ce que je peux et apprécie la vie!

19 years ago, I was diagnosed with Cushings disease and had my first of 3 brain surgeries to remove an ACTH producing tumor (my second and third surgeries were in May 2002 at NIH in the US). I wish to thankMary Kelly O’Connor for everything she does. To this day, I still cherish your visit at NIH. Since 2002, I am Cushings-free (hoping the tumor will not come back), but live with hypopituitarism which is a chronic illness not easy to manage. I try to live day by day with what I can manage and appreciate being alive!

It was 19 years ago, I received the diagnosis of the disease of Cushing and lived the first of 3 surgeries to the pituitary gland in the brain, to remove a tumor producing the ACTH. The other two surgeries took place at the nih to the USA in may 2002. Thanks to Mary Kelly O’connor for everything she does and for his visit during my stay at the NIH (very touching). Since 2002, I no longer have the cushing but lives with a chronic disease: the hypopituitarism poses a challenge as to its management. Despite everything, I try to live day to day by doing what I can and appreciate life!

Cushing’s has a LONG list of symptoms, including muscle weakness, insomnia, pain, joint problems, bruising, and much, much more. I had it all. No one saw the whole, but just a part, until I found an awesome PCP who said, “Robin, I know it is endocrine, but I don’t know what it is.” She worked with me to help me find someone.

I joined a great support forum at http://www.cushings-help.com and learned about my disease, and found out I thought I probably had Cushing’s. Multiple endocrinologists later, I followed the advice of my (then) new friends (many of whom I’ve met in real life due to the bond we have), and went to a wonderful endocrinologist in Los Angeles, CA. Yes, I traveled across the continent to see him. This was 2006. 10 years later, he is still my endo.

I was diagnosed after many, many, many tests, including urinary free cortisol testing, salivary cortisol testing, and midnight serum cortisol testing in a hospital lab, as well as many other hormones affected by this high cortisol. I had imaging many times with multiple MRI’s. A tumor was found on my pituitary. I had surgery to have it removed in Pittsburgh with a renowned surgeon. Some of the cells were in my cavernous sinuses, so I didn’t get a “cure”. I did have remission for a while. 3 years later, I was rediagnosed after the same testing and, in 2010, had my adrenal glands removed in Wisconsin with an expert to control the high cortisol. Adrenal glands produce cortisol, although the pituitary tells it how much and when to do it. Since my pituitary tumor cells kept telling my adrenals to produce too much cortisol, I had a reoccurrence.

Now, I have to take multiple hormones to live. I am replacing those I now longer produce due to the surgeries and the tumor. I feel blessed to feel as good as I do. Occasionally, my replacements aren’t quite right or I need more, and I get sick. Most of the time they are.

I have attached a recent picture with a picture in 2006, the night before pituitary surgery. You can see the difference.

If you want to know more about Cushing’s, feel free to contact me. I can put you in touch with awesome support groups here on Facebook or you can go to the above-mentioned site. If you feel like you have the symptoms of the disease (you can look them up) and have been dismissed by endocrinologists and other doctors, we can help. Cushing’s kills.

I want to thank all my Cushing’s friends who have supported me through all this, plus my good friend Joan who has cared through it all. Most of all, I want to thank my daughters who have stood with me through it, gone to umpteen places and stayed with me through doctor visits and surgeries, then have taken care of me after.

Also, thanks to Mary Kelly O’Connor, who started the Cushing’s Help site and keeps it going!! She is a lifesaver for thousands by doing that.