Adapted from Participatory Medicine

This is kind of a “cheat” post since it’s a compilation of other posts, web pages, message board posts and some original thoughts.  I’m writing it to submit to Robin’s Grand Rounds, being hosted next week on her blog.

For all of my early life, I was the good, compliant, patient.  I took whatever pills the doctor prescribed, did whatever tests h/she (most always a he) wrote for.  Believed that whatever he said was the absolute truth.  He had been to med school.  He knew what was wrong with me even though he didn’t live in my body 24/7 and experience what I did.

I know a lot of people are still like this.  Their doctor is like a god to them.  He can do no wrong – even if they don’t feel any better after treatment, even if they feel worse.  “But the doctor said…”

Anyway, I digress.

All this changed for me in 1983.

At first I noticed I’d stopped having my periods and, of course, I thought I was pregnant. I went to my Gynecologist who had no explanation. Lots of women lose their periods for a variety of reasons so no one thought that this was really significant.

Then I got really tired, overly tired. I would take my son to a half hour Choir rehearsal and could not stay awake for the whole time. I would lie down in the back of the van, set an alarm and sleep for the 30 minutes.

A whole raft of other symptoms started appearing – I grew a beard (Hirsuitism), gained weight even though I was on Weight Watchers and working out at the gym nearly every day, lost my period, everything hurt, got what is called a “moon face” and a “buffalo hump” on the back of my neck. I also got stretch marks. I was very depressed but it’s hard to say if that was because of the hormone imbalance or because I felt so bad and no one would listen to me.

I came across a little article in the Ladies Home Journal magazine which said “If you have these symptoms…ask your doctor about Cushing’s”. After that, I started reading everything I could on Cushing’s and asking my doctors. Due to all my reading at the library and medical books I bought, I was sure I had Cushing’s but no one would believe me. Doctors would say that Cushing’s Disease is too rare, that I was making this up and that I couldn’t have it.

I asked doctors for three years – PCP, gynecologist, neurologist, podiatrist – all said the now-famous refrain.  It’s too rare.  You couldn’t have Cushing’s.  I kept persisting in my reading, making copies of library texts even when I didn’t understand them, keeping notes.  I just knew that someone, somewhere would “discover” that I had Cushing’s.

My husband was on the doctors’ sides.  He was sure it was all in my mind (as opposed to all in my head!) and he told me to just think “happy thoughts” and it would all go away.

A Neurologist gave me Xanax. Since he couldn’t see my tumor with his Magnetic Resonance Imaging (MRI) machine there was “no possibility” that it existed. Boy was he wrong!

Later in 1986 I started bruising incredibly easily. I could touch my skin and get a bruise. On New Year’s Day of 1987 I started bleeding under the skin. My husband made circles around the outside perimeter each hour with a marker, like the rings of a tree. When I went to my Internist the next day he was shocked at the size. He now thought I had a blood disorder so he sent me to a Hematologist/Oncologist.

Fortunately, the Hematologist/Oncologist ran a twenty-four hour urine test and really looked at me. Both he and his partner recognized that I had Cushing’s. Of course, he was sure that he did the diagnosis.  No matter that I had been pursuing this with other doctors for 3 years.

It was not yet determined if it was Cushing’s Disease (Pituitary) or Syndrome (Adrenal). However, he couldn’t help me any further so the Hematologist referred me to an Endocrinologist.

The Endocrinologist, of course, didn’t trust the other tests I had had done so I was back to square one. He ran his own multitude of tests. He had to draw blood at certain times like 9 AM. and 5 PM. There was a dexamethasone suppression test where I took a pill at 10 p.m. and gave blood at 9 am the next day. I collected gallons of urine in BIG boxes (Fun in the fridge!). Those were from 6 a.m. to 6 a.m. to be delivered to his office by 9 a.m. same day. I was always worried that I’d be stopped in rush hour and the police would ask about what was in that big container. I think I did those for a week. He also did standard neurological tests and asked lots of questions.

When the endo confirmed that I had Cushing’s in 1987 he sent me to a local hospital where they repeated all those same tests for another week and decided that it was not my adrenal gland (Cushing’s Syndrome) creating the problem. The doctors and nurses had no idea what to do with me, so they put me on the brain cancer ward.

When I left this hospital after a week, we didn’t know any more than we had before.

As luck would have it, NIH (National Institutes of Health, Bethesda, Maryland) was doing a clinical trial of Cushing’s. I live in the same area as NIH so it was not too inconvenient but very scary at first to think of being tested there. At that time I only had a choice of NIH, Mayo Clinic and a place in Quebec to do this then-rare pituitary surgery called a Transsphenoidal Resection. I chose NIH – closest and free. After I was interviewed by the Doctors there, I got a letter that I had been accepted into the clinical trial. The first time I was there was for 6 weeks as an inpatient. More of the same tests.

There were about 12 of us there and it was nice not to be alone with this mystery disease. Many of these Cushies (mostly women) were getting bald, couldn’t walk, having strokes, had diabetes. One was blind, one had a heart attack while I was there. Towards the end of my testing period, I was looking forward to the surgery just to get this whole mess over with. While I was at NIH, I was gaining about a pound a day!

The MRI still showed nothing, so they did a Petrosal Sinus Sampling Test. That scared me more than the prospect of surgery. (This test carries the risk of stroke and uncontrollable bleeding from the incision points.) Catheters were fed from my groin area to my pituitary gland and dye was injected. I could watch the whole procedure on monitors. I could not move during this test or for several hours afterwards to prevent uncontrolable bleeding from a major artery. The test did show where the tumor probably was located. Also done were more sophisticated dexamethasone suppression tests where drugs were administered by IV and blood was drawn every hour (they put a heplock in my arm so they don’t have to keep sticking me). I got to go home for a weekend and then went back for the surgery – the Transsphenoidal Resection. I fully expected to die during surgery (and didn’t care if I did) so I signed my will and wrote last letters to those I wanted to say goodbye to. During the time I was home just before surgery, a college classmate of mine (I didn’t know her) did die at NIH of a Cushing’s-related problem. I’m so glad I didn’t find out until a couple months later!

November 3, 1987, the surgeon, Dr. Ed Oldfield, cut the gum above my front teeth under my upper lip so there is no scar. He used tiny tools and microscopes. My tumor was removed successfully. In some cases (not mine) the surgeon uses a plug of fat from the abdomen to help seal the cut. Afterwards, I was in intensive care overnight and went to a neurology ward for a few days until I could walk without being dizzy. I had some major headaches for a day or two but they gave me drugs (morphine) for those. Also, I had cotton plugs in my nostrils. It was a big day when they came out. I had diabetes insipidus (DI) for a little while, but that went away by itself – thank goodness!

I had to use a foam product called “Toothies” to brush my teeth without hitting the incision. Before they let me go home, I had to learn to give myself an injection in my thigh. They sent me home with a supply of injectible cortisone in case my level ever fell too low (it didn’t). I was weaned gradually off cortisone pills (scary). I now take no medications. I had to get a Medic Alert bracelet. I will always need to tell medical staff when I have any kind of procedure – the effects of my excess cortisone will remain forever.

I went back to the NIH for several follow-up visits of a week each where they did all the blood and urine testing again. After a few years NIH set me free. Now I go to my “outside” endocrinologist every year for the dexamethasone suppression test, 24-hour urine and regular blood testing.

As I get further away from my surgery, I have less and less chance that my tumor will grow back. I have never lost all the weight I gained and I still have the hair on my chin but most of my other symptoms are gone. I am still and always tired and need a nap most days. I do not, however, still need to take whole days off just to sleep.

I consider myself very lucky that I was treated before I got as bad as some of the others on my floor at NIH but think it is crazy that these symptoms are not taken seriously by doctors.

My story goes on and if you’re interested some is on this blog and some is here:

Forbes Magazine | MaryO’s bio | Cushing’s and Cancer Blog | Guest Speakers | Interview Archive  1/3/08 | Cushing’s Awareness Day Testimonial Archive |

Because of this experience in getting a Cushing’s diagnosis – and later, a prescription for growth hormone – I was concerned that there were probably other people not being diagnosed with Cushing’s. When I searched online for Cushing’s, all the sites that came up were for dogs and horses with Cushing’s.  Not what I was looking for!

In July of 2000, I was talking with my dear friend Alice, who runs a wonderful menopause site, Power Surge, wondering why there weren’t many support groups online (OR off!) for Cushing’s.  This thought percolated through my mind for a few hours and I realized that maybe this was my calling.  Maybe I should be the one to start a network of support for other “Cushies” to help them empower themselves.

I wanted to educate others about the awful disease that took doctors years of my life to diagnose and treat – even after I gave them the information to diagnose me.  I didn’t want anyone else to suffer for years like I did.  I wanted doctors to pay more attention to Cushing’s disease.

The first website (http://www.cushings-help.com) went “live” July 21, 2000.  It was just a single page of information. The message boards began September 30, 2000 with a simple message board which then led to a larger one, and a larger.  Today, in 2010, we have over 7 thousand members.  Some “rare disease”!

The message boards are now very active and we have weekly online text chats, weekly live interviews, local meetings, conferences, email newsletters, a clothing exchange, a Cushing’s Awareness Day Forum, podcasts, phone support and much more. Because I wanted to spread the word to others not on “the boards” we have extended out to social networking sites – twitter groups, facebook groups, twines, friendfeeds, newsletters, websites, chat groups, multiply.com, and much, much more.

People are becoming more empowered and participating in their own diagnoses, testing and treatment.  This have changed a lot since 1983!

When I had my Cushing’s over 20 years ago, I never thought that I would meet another Cushing’s patient in real life or online. Back then, I’d never even been aware that there was anything like an “online”. I’m so glad that people struggling with Cushing’s today don’t have to suffer anymore thinking that they’re the only one who deals with this.

Because of my work on the websites – and, believe me it is a ton of work! – I have had the honor of meeting over a hundred other Cushies personally at local meetings, conferences, at NIH (the National Institutes of Health in Bethesda, MD where I had my final diagnosis and surgery). It occurred to me once that this is probably more than most endocrinologists will ever see in their entire career. I’ve also talked to countless others on the phone. Amazing for a “rare” disease!

I don’t know what pushed me in 1983, how I got the confidence and self-empowerment to challenge these doctors and their non-diagnoses over the years.  I’m glad that I didn’t suffer any longer than I did and I’m glad that I have a role in helping others to find the medical help that they need.

What do *YOU* think?  How are you becoming empowered?

Ten years ago yesterday I was talking with my dear friend Alice, who runs a wonderful menopause site, Power Surge, wondering why there weren’t many support groups online (OR off!) for Cushing’s and I wondered if I could start one myself.  We decided that I could.

This website (http://www.cushings-help.com ) first went “live” July 21, 2000 and the message boards September 30, 2000. Hopefully, with this site, I’ve made  some helpful differences in someone else’s life.

Who could have known how this site – now sites – could have grown and grown.

It started as a one-page bit of information about Cushing’s  In people, not dogs, horses, ferrets…

Then, it started growing and growing, taking on a life of its own.  To truly emulate Alice, I added message boards in September.  They were really low-quality, a type put together by an old HTML editor but we had members and actually had discussions.

Not too long after, a real board was opened up and things really started happening.  Then we outgrew that board and ended up in our current home.

The message boards are still very active and we have weekly online text chats, live interviews, local meetings, email newsletters, a clothing exchange, a Cushing’s Awareness Day Forum, podcasts, phone support and much more.

Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the “Cushie Helper” program where they support others with one-on-one support, doctor/hospital visits, transportation issues and more.

Things have changed over the years, though.  The original Cushings-Help site is still updated with new bios, new Helpful Doctor listings, meetings and more but all new articles have moved to a new site – http://www.cushie.info/ – which is much easier to maintain than the older strictly-HTML site.

Also new are a CushieWiki, a site for the Cushing’s Help Organization, several blogs (of which this is one), three Facebook entities (Cushing’s Help Cause; Cushing’s Help and Support Group; and the Cushings Help Organization, Inc.); a Twitter stream and much more.

New recently:

NEW! Daily News Summary at Cushing’s Daily News

NEW! cushie.info is now optimized for viewing on PDAs and mobile phones

NEW!  Medical Centers. These are centers which specialize in Cushing’s, pituitary or adrenal patients.  If you, as a patient, have one that you’d like to have added, please send any info you may have to Mary O’Connor (MaryO).  Thank you!

Occasional Newsletters are Back: Members of cushie.info will automatically receive these occasional newsletters. Of course, you may opt-out at any time. Thank you for your interest.  Non-members may subscribe through the Newsletter Subscription module on the left side of this page.

Cushie Toolbar: Be the first to know! The Cushie Toolbar features a Google search box, the 911 Adrenal Crisis! page, the Cushie Reads book recommendations page, Cushie Calendar, all the bios, arranged by diagnosis type or date, add (or update) your bio, our locations around the world, the message boards and chatroom, Helpful Doctors list, add (or update) your Helpful Doctor, support page, scrolling message area for Cushing’s news, Cushing’s blogs, NIH Clinical trials for Cushing’s, pituitary and adrenal, the Cushings Help Organization cause on Facebook, Staticnrg and Cushings on Twitter, new CushieWiki and listen to the Cushing’s podcasts right from this toolbar.

CushieWiki: Please feel free to contribute! The CushieWiki is an ever-changing, ever-growing body of Cushing’s knowledge provided by *YOU* and other patients.

Members of the cushie.info site have additional features:

• Your Profile
• Contact Us
• Member List
• How To Add Friends
• Local Liaisons
• Pen Pals
• Add an Article!
• Access the Archives.  News items and abstracts are archived after one month
• Calendar: Add Events
• Calendar: Add a Meeting Venue
• Photos and Images
• Upload Images
• Submit a Link
• Track Health & Fitness Achieve your goals, print charts for your doctors. Add anything else that you would like to track. These are private graphs, available only to you.
• A special menu along the bottom of each page where you can take notes, make changes to your profile, subscribe to RSS feeds and much more.
• Add your Twitter user name and the last 10 “tweets” will show up in your profile for other members to see
• Members can submit links (URLs), send each other PMs, email each other directly, add avatars, add Helpful Doctors and rate current ones or add reviews.  They can also add articles, events and meeting venues. Some articles are available to members only.

We’ve grown out of control from that simple one-page info sheet to way more than I could have ever imagined in that phone conversation with my friend.  I would never have thought that I could do any of this, provide these services and touch the lives of so many others.

I also never thought that I would spend hours a day updating, adding, improving, helping, emailing, phoning, paperwork, writing…

But it’s all worth it if the lives of other Cushies are made better.

Here’s to another 10 years…

Coming soon! A Cushing’s App for the iPod/iPhone.  There’s a mockup you can play with at http://bit.ly/91hdQw

Right now it has Podcasts, Cushing’s News, Latest Bios, Upcoming Events, Blog, Twitter, NIH Trials, the latest posts on the Message Boards, Helpful Links, New MDs, Johns Hopkins, Mayo Clinic, PubMed, WebMD.

More may be added before this goes live later this month.

People have suggested symptoms and/or drug trackers.  Robin found us a really neat way to make our own individual specially tailored apps.

The following directions are adapted from http://www.doseofdigital.com/2010/01/build-iphone-medication-tracker-10/ and could also be used to track surgeries, weight, anything you want.

How to Build Your Own iPhone Tracker/Reminder System:

1) First, go to Google Docs.  Start a new spreadsheet and fill in the columns you want to track. Like this:

You can see that this example tracks weight, whether or not meds were taken, and how you feel.

2) Create a form (click “Form”–>”Create a form”). The form will already have your column headers populated as questions automatically (you don’t need to add a column for date or time, as Google will do this automatically).

You’ll then have a form like this:

You can add a little flair via the “Theme” selector.

You can also change the “Took Medication” into a multiple choice question and the “I Feel…” into a Likert scale, if you wish:

3) After you finish the form, email it to yourself. When you get the email, open it on your iPod/iPhone.  Follow the link and this is what you’ll get:

Tah dah. A form on your phone that you can fill out. Fill it out and submit it. Each time you fill out the form, it automatically adds the data to the right spot in your spreadsheet. Like so:

Cool, right?

4) Wondering how your doing without having to look at the spreadsheet? No problem. When editing your form, select “More actions” –> “Edit confirmation.” Check the “Let everyone see response summary” box.

Now, every time you complete the form, you’ll get a confirmation screen with a link to a summary screen. Here it is:

5) What’s that? You don’t want to have to click a link in an email (that you’ll probably lose) every day to get to the form. Me neither. So, when you have the form open, click that little “+” sign at the bottom of the screen and you’ll get this:

Select “Add to Home Screen”. You’ll then get a screen asking you to name your icon and then you can place it anywhere on your iPod/iPhone. Viola.

Check it out…it’s even got the fancy theme to make the icon look good.

So, every time you need to record your medication (or whatever), just click the icon and fill out the form. Done.

6) Need a reminder?

Go to your Google Calendar and set up a recurring “meeting” for yourself. Like so:

Now, you’ll get an email reminding you to complete your tracker.

7) Need more help?  Discuss this on the message boards.

We’ve had quite a bit of discussion on this topic on the Cushing’s Help message boards lately.  A few samples:

We live in a part of Ontario known as “the Chemical Valley”. We are surrounded by Dow Chemical, Imperial Oil, Dupont, British Petroleum, Shell Oil and about 12 other chemical plants.
There has been many people complaining about the high rate of cancer in our area and the government was forced to do a health study in our area but as of yet they haven’t figured out how to do the testing. My guess is they don’t want us to know how sick we really are.
We are part of the Goiter Belt which I think extends to PA. There are very few people here who do not have thyroid problems.
My 2 brothers and 2 sisters are suffering the same as I am and so are all our children! Both my parents died in their 50′s from untreated hypothyroid disease. Probably had adrenal/pituitary damage too when I think about their symptoms.
I see hypothyroid people everywhere I look and have since started checking for the hump and cushing signs.
Holy endocrine system Batman, I think we are all suffering at the hands of the Big Oil Companies. My husband works for British Petroleum!!!!

I hate to even think about it. Growing up in Buffalo – erie county new york, which is nestled between lake ontario & lake erie, I don’t believe the water is safe to drink. There are several epa areas of concern around lake ontario & lake erie. AOC’s (areas of concern) are highly polluted areas. Specificlly erie canal & buffalo river are awful. I found out some years ago that a playground that I frequented as a child was a landfill for hazardous chemicals. Now I have a pituitary tumor, coincidence? Probably not

I live near Green Bay WI, which is part of Lake Michigan. I believe our drinking water comes from the Bay. The water is polluted from the papermills (PCPs). I also did play on a heavily fertilized and treated lawn from a chemical company for at least 5 years when I was little. I had a thyroid nodule removed, hypothyroidism, and I am still in the testing phase to see if I have a pituitary tumor. My father also has hopothyroid, and seems to have kind of a hump. He has had cancer as well.
I remember the nuclear accident in the 80′s. It was really scary. I remember them saying something like it was worse than what they reported.

This is one of my future quests, I live in a town on 10,000 people and there are many cases of brain and pituitary tumors, I hear it all the time, I know of at least 3 definite pituitary cushing’s cases in my small town. My future goal when I am feeling better is to put my story in the paper, have people call me if they or someone they know has a funtioning pituitary tumor, also brain tumors and brain cancer has some large numbers too. The state sent me a letter I had to fill out when I first found out about my tumor, it was manditory, if I did not fill it out they where going to have my doctor fill it out so I did. So somewhere someone is keeping track of brain tumors in my town. I want to find out the numbers, if it is as bad as I think it is I am going to calll CDC to find out why. I also want to start a support group. But I need to feel better first because this is going to be a big undertaking.

There are many more postings on this topic.

From Wennersten: There’s something in the water

Scientists now tell us there is something in our waters that we least expected.

That “something” is a class of chemicals called endocrine disruptors, and Dr. Vicki Blazer, a fisheries biologist at the United States Geological Survey, thinks the chemicals are responsible for the high concentrations of intersex fish found in the Potomac, and other rivers in the mid-Atlantic.

The chemicals also prove a threat to human health, but a bit of explanation, first.

Our body’s endocrine system is a complex network of glands and hormones that regulate growth, development, and the operation of various organs. The endocrine glands (for example the thyroid, adrenal, pancreas, testes, ovaries and pituitary glands) release hormones that act as chemical messengers and regulate many life functions.

Endocrine disrupters are chemicals that interfere with this system, by either acting like a hormone, or blocking a hormone’s function. They can be natural, but many are man-made such as PCBs, dioxin, DDT and other pesticides, pharmaceuticals and plasticizers. They are found in many products, including plastic bottles, metal food cans, detergents, flame retardants, food, toys, cosmetics and pesticides. They enter the environment and are now commonly found in our streams, rivers, bays and oceans, where scientists are observing problems.

Then Great Lakes Area of Concerns shows a map of problem areas

Forty-three AOCs have been identified: 26 located entirely within the United States; 12 located wholly within Canada; and five that are shared by both countries. Two Canadian AOCs have been delisted and one U.S. AOC has been delisted leaving 30 AOCs remaining on the U.S. side of the border.

RAPs are being developed for each of these AOCs to address impairments to any one of 14 beneficial uses (e.g., restrictions on fish and wildlife consumption, dredging activities, or drinking water consumption) associated with these areas.  USEPA has assigned RAP Liaisons for AOCs.  Sediments have been identified as serious problems in many AOCs. AOC Principles and Guidelines have been finalized for formally delisting these areas as beneficial uses are restored.

What do YOU think?  Are you in one of these areas?

I’ve made a mockup you can play with at http://bit.ly/91hdQw

It has the podcasts, upcoming events, latest bios, newest doctors, Cushings Tweets, blog and news/abstracts.

It’s all made – I just have to pay the site to make this live.

I don’t know if it would be worth it, though – it would cost $199.

What do you think?

Part one was a blog post here.  That page includes comments and suggestions from readers.

National Library of Medicine Launches Mobile MedlinePlus to Meet the Health Information Needs of an On-the-Go Public

Wondering what the side effects are for your new prescription? Go to Mobile MedlinePlus (http://m.medlineplus.gov) while you’re waiting for the pharmacist to fill your order!

Or, instantly look up the symptoms of H1N1 flu if you’re at the supermarket and your child’s school calls you to tell you he doesn’t feel well.

The National Library of Medicine’s Mobile Medline Plus builds on the NLM’s MedlinePlus Internet service, which provides authoritative consumer health information to over 10 million visitors per month. These visitors access MedlinePlus (http://medlineplus.gov) from throughout the United States as well many other countries, and use desktop computers, laptops and even mobile devices to get there.

The mobile Internet audience is large and growing fast, almost doubling from February 2007 to February 2009. Some experts predict that within the next five years, more people will connect to the Internet via mobile devices than via desktop or laptop computers. People use their mobile devices to accomplish a variety of tasks, including finding health information. With this in mind, NLM developed the mobile version of MedlinePlus to bring high-quality health information to users on the go.

“We know that a huge number of people are seeking good health information on the Web, noted NLM Director Dr. Donald A.B. Lindberg. What better way to reach out to them than by offering this new mobile service, which delivers trustworthy, consumer-friendly information instantly, anywhere?”

Mobile MedlinePlus is available in English and Spanish (http://m.medlineplus.gov/spanish) and includes a subset of content from the full Web site. It includes summaries for over 800 diseases, wellness topics, the latest health news, an illustrated medical encyclopedia, and information on prescription and over-the-counter medications.

For instance, you could visit the “Talking With Your Doctor” page on Mobile MedlinePlus to learn how to get the most out of your doctor’s visit.

Mobile MedlinePlus can also help you when you’re trying to choose an over-the-counter cold medicine at the drug store.

And if you’re traveling abroad, you can use Mobile MedlinePlus to learn about safe drinking water.

Mobile MedlinePlus puts reliable health information at your fingertips.

*High resolution screen shot of Mobile MedlinePlus available upon request.

The National Library of Medicine is part of the National Institutes of Health, an agency of the U.S. Department of Health and Human Services. It is the nation’s largest medical library.

The National Institutes of Health (NIH) — The Nation’s Medical Research Agency — includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

From http://www.nih.gov/news/health/jan2010/nlm-22.htm?utm_source=twitterfeed&utm_medium=twitter

This is an interesting article…

From http://www.dailymail.co.uk/news/article-1243063/They-called-The-Man-Who-Killed-Elvis-Now-stars-doctor-finally-reveals-true-madness-Kings-final-days.html

..The doctor’s first thought was that Elvis had had a seizure and he injected him with a stimulant to improve his breathing. Then he and Elvis’s manager dragged him into the ensuite bathroom and managed to get him into the bath, which they filled with cold water. Soon they were dressing him in his stage clothes.

Incredibly Elvis managed to perform that night, leaving Dr Nick determined to find out what had caused the handsome man he first met to degenerate into the bloated figure he had become.

Elvis himself refused to give him any clues. Finally, one of his problems was revealed – he and Priscilla were getting divorced. Three days after the final decree was issued in California, the singer, in worse condition than he had ever been, chartered a plane back to Graceland and called for Dr Nick.

This time the doctor arrived to find his patient’s face puffy, pink and almost transparent, and his stomach distended. He suspected either an allergic reaction or heart failure, especially since heart disease ran in the family.

Hospital tests established that Elvis had hepatitis, an enlarged liver ( possibly from painkillers) and Cushing’s syndrome. The last was a hormonal disease that caused bloating, and was down to the many steroids he had been taking to combat the asthma that ran in the family and his ongoing colon problems.

When Dr Nick asked him why he was also covered in bruises, Elvis tried to tell him the marks were from acupuncture needles. Finally he confessed that a couple of Beverly Hills physicians had prescribed the narcotic Demerol to cure back and neck pain, and Novocaine to reduce the pain at the injection sites…

What do you think?

I saw this on another site and I stayed up all night making one for Cushies because I thought it was so cool.

This is a toolbar you can install on any browser and it will link to what I think are the most important parts of the Cushing’s websites. If you have other ideas, please let me know.

Right now, this contains (from left to right)

1. The Cushie ribbon icon which takes you to the home page of the newer cushie.info site. Click on the little down arrow to the right of the ribbon and another whole menu appears!

   

2. Next to that is a Google search box.
3. An icon for the 911 Adrenal Crisis! page
4. A link to the Cushie Reads book recommendations page on amazon.com
5. The Cushie Calendar
6. All the bios, arranged by diagnosis type
7. Add (or update) your bio
8. Our locations around the world
9. The message boards and chatroom
10. Helpful Doctors list
11. Add (or update) your Helpful Doctor
12. The Support page where people can make donations to help keep all these websites going.
13. A little scrolling message area for Cushing’s news.
14. Cushing’s blogs. I’m still working on this – and I’m not sure how many I can add but for the moment, this blog is included as well as Cushie Bloggers and survive the journey

    When any of these update, the icon changes to show that there are new posts.

    This area now includes NIH Clinical trials for Cushing’s, pituitary and adrenal. Be the first to know when new trials are listed.

15. The Cushings Help Organization cause on Facebook
16. Links to Staticnrg and Cushings on Twitter. Again, more can be added. If you talk mostly about Cushing’s on Twitter, please let me know.
17. The new CushieWiki. BTW, please feel free to sign up and become a contributor/editor.
18. A radio button – you can play the Cushing’s podcasts right from this toolbar. You can also add stations that you’d like to listen to.
19. You can also add other modules like games, weather, email, hundreds of different things.

Download this toolbar or see a sample.

About privacy:

cushie tools is committed to maintaining the following privacy practices:

1. No Spyware Policy – the toolbar does not collect or transmits Identifiable information and does not monitor personal toolbar usage.
   The toolbar sends unidentifiable and non-personal statistical data to enable quality assurance and improve support processes. Such non-personal data includes unidentifiable usage of toolbar components and queries. You can opt not to send such statistical data at any time from your toolbar Options dialog box.
2. No Adware Policy : exposure to unwanted advertisements is not required in order to use the toolbar. The toolbar does not launch pop-up or pop-under advertisement windows or any other type of obtrusive ads.
3. Unobtrusive: The toolbar does not enable other applications to access data stored on your computer’s hard drive or in your online accounts. The toolbar does not modify pages you visit or modify your search experience. You may voluntarily opt to receive Publisher notifications (such as Community Alerts) or use other advanced functionalities offered by cushie tools.
4. Easy uninstall : you can easily uninstall the toolbar at any time using the toolbar’s standard uninstall package (Add/Remove Programs in Windows, Add-on Removal in Firefox, etc.).
5. Easy deactivation: you can easily deactivate your toolbar at any time by clicking the “View” menu in your browser and deselecting the name of your community toolbar.
6. Full control : you have full control over your toolbar and you can add/remove toolbar components at any time using your toolbar’s Options dialog box.

7. Report – cushie tools is committed to ensuring your Privacy and safety while using your community toolbar. If you have a reason to believe that your rights have been infringed upon, please email privacy@conduit.com to contact the owners of Platform that was used by cushie tools to create your community toolbar, and your application will be handled at the earliest convenience.

Finally, I would like to add that installing this toolbar is possibly a way for the sites to make a little money although the hosting site doesn’t disclose how much they give back and how many people have to do how much searching to make any kind of profit.

The theory is that Google pays the host company, Conduit, like it does for Google ads – I’ve seen them on other sites but have never used them because I want to try to keep the sites ad free and non-tacky. Then, depending on the number of people who have installed this toolbar, and how much they use it, a percentage of that money is supposed to come back to Cushing’s Help.

I have no expectations of making any money, though. I just thought that it looked like an interesting new way for people to find things easily on the websites, listen to podcasts, and get the latest news.

Please note – after installation there’s a little popup window that says you might get alerts. I promise I won’t send those out unless it’s something serious like the boards are back up after a day of being down.

Thanks for reading! I hope you’ll give this a try.

I think that this is so important, especially with our health.  Had I not been an active participant and followed several doctors’ advice 25 years ago, I’d most likely not been here to write this.

I see this all the time, though.  Whatever the doctor says is true.  People will say that the doctor gave me this or that med but they don’t know what it is for.

I just don’t get how people can take meds and not have a clue what they are, how they work, how they might interact with other drugs they may be taking.  But it happens because people blindly follow whatever a doctor may give them.

Participation is so important – you have to know how YOU’RE feeling, what YOUR symptom are.  Do your own research.  Your doctor doesn’t know what it feels like to live in your body no matter how much you try to tell him/her.

Ultimately, you are the one who cares most about yourself and the only one who can make a difference through your research, thoughts and actions.

Just because a doctor gives you something, you don’t have to take it.  24 years ago a locally well-known neurologist “gave me” Xanax. Since he couldn’t see my tumor with his Magnetic Resonance Imaging (MRI) machine there was “no possibility” that it existed.  Had I followed his advice, taken the Xanax and stopped pursuing a Cushing’s diagnosis I would most have likely died by now.

The doctor was going by the odds.  The odds were that I really didn’t have a pituitary tumor.  But I’m not a statistic and neither are you.  Follow your instincts and take care of YOU.  This is the only life you’ll ever have.

The most healing thing we can do for ourselves is to participate in the process of our lives as fully as we can-even when the unexpected and the fearful happen.

~Today’s Page-a-Day calendar

What do YOU do to keep participating in your health care and daily life?

Maybe, finally, things are looking up for Cushies?  There have been so many ideas, trials, false starts over the years.

When I was at NIH in 1987, I had tests that they thought would help diagnose Cushing’s earlier.  No one has those tests anymore so I guess they didn’t do the trick.  But they have been trying for at least 23 years to find something to help people get diagnosed a little earlier.

There has been improvement in the drug area, too. Back then, no growth hormone, no  ketoconazole to take to lower cortisol, although that was used as a testing agent.

Being diagnosed with Cushing’s may still seem to take forever but there have been improvements over these years, slow but sure.

One of our members, Lori, sent this information along about some hopeful news for 2010.

Corcept Therapeutics Announces Four Anticipated Milestones for 2010

Completion of Enrollment of CORLUX Pivotal Phase 3 Trial for Cushing’s Syndrome in 1Q 2010; Announcement of Results From the CORLUX Phase 3 Trial for Cushing’s Syndrome in 3Q 2010; Submission of CORLUX New Drug Application (NDA) for Cushing’s Syndrome in 4Q 2010; Initiation of Phase 1 for Selective GR-II Antagonist — CORT 108297 — in 1Q 2010

MENLO PARK, CA–(Marketwire – 01/05/10) – Corcept Therapeutics Incorporated (NASDAQ:CORT – News), a pharmaceutical company engaged in the discovery and development of drugs for the treatment of severe metabolic and psychiatric disorders, announces its anticipated milestones for 2010.

“These four milestones should mark a transformational year for the company,” said Joseph K. Belanoff, M.D., Chief Executive Officer of Corcept. “Most important, we expect to complete enrollment in our pivotal trial of CORLUX for the treatment of Cushing’s Syndrome in the first quarter of this year. The results of this trial, if positive, should support an NDA submission by year-end and, if approved by the FDA, commercialization of CORLUX in 2011. We are focusing our efforts on preparing to make CORLUX commercially available to patients and address this significant unmet medical need.”

FOUR KEY MILESTONES FOR 2010

We expect to reach major milestones related to our development of CORLUX and our selective GR-II antagonists during 2010:

CORLUX for Cushing’s Syndrome

We are nearing completion of enrollment in our 50-patient open-label Phase 3 study of CORLUX for the treatment of endogenous Cushing’s Syndrome, a serious metabolic disorder affecting approximately 20,000 patients in the US.

Based on the timing of enrollment and the 6-month glucose tolerance and blood pressure endpoints agreed to with the FDA, we anticipate completing patient treatment in the Phase 3 trial of CORLUX for Cushing’s Syndrome and announcing efficacy results in 3Q 2010.

We expect to submit our NDA to the FDA in the fourth quarter of 2010. Additional studies and preparation of documentation in support of our NDA submission are ongoing, which should enable our submission soon after the Phase 3 efficacy results are available.

We are now preparing for the 2011 commercialization of CORLUX in the United States and pursuing partnerships for commercialization outside of the United States. Management is focused on making this potential treatment available to patients in an expeditious and efficient manner.

The FDA granted us Orphan Drug Designation for CORLUX for the treatment of endogenous Cushing’s Syndrome, which provides seven years of marketing exclusivity in the U.S. from the date of approval, as well as potential tax credits related to product development expenses.

Selective GR-II Antagonist — CORT 108297 — for the Prevention of Weight Gain Caused by Antipsychotic Medication

We plan to begin enrollment in the Phase 1 study of our lead selective GR-II antagonist, CORT 108297, in the first quarter of 2010, based on the Investigational New Drug (IND) application we submitted to the FDA in December 2009. The study is a single ascending dose safety and tolerability study in healthy volunteers, which should be completed by year-end 2010. If successful, this study should support advancing CORT 108297 into additional trials evaluating its safety and efficacy in the prevention of weight gain and other metabolic effects caused by antipsychotic medications, a major unmet medical need in a large market.

During 2010 we plan to continue our research and preclinical efforts to advance additional compounds within our three distinct series of selective GR-II antagonists. Based on the published literature, the regulation of cortisol could have applications in a wide array of serious diseases, including diabetes, obesity, hypertension, osteoporosis, Alzheimer’s disease, and other neurodegenerative diseases.

CORLUX for Psychotic Depression

We plan to continue enrolling patients in our Phase 3 trial of CORLUX for the treatment of psychotic depression. As previously announced, we are conducting the trial at eight clinical sites to focus our resources on completion of our NDA and the near-term commercialization of CORLUX for the Cushing’s Syndrome indication. With this reduced number of sites, we do not expect data from this trial to be available during 2010.

About Cushing’s Syndrome

Endogenous Cushing’s Syndrome is caused by prolonged exposure of the body’s tissues to high levels of the hormone cortisol due to a variety of pathologic conditions. Cushing’s Syndrome is an orphan indication which most commonly affects adults aged 20 to 50. An estimated 10 to 15 of every one million people are newly diagnosed with this syndrome each year, resulting in over 3,000 new patients in the US. An estimated 20,000 patients in the US have Cushing’s Syndrome. Symptoms vary, but most people have one or more of the following manifestations: high blood sugar, diabetes, high blood pressure, upper body obesity, rounded face, increased fat around the neck, thinning arms and legs, severe fatigue and weak muscles. Irritability, anxiety, cognitive disturbances and depression are common. Cushing’s Syndrome can affect every organ system in the body and can be lethal if not treated effectively. There is no FDA-approved treatment for Cushing’s Syndrome.

About Psychotic Depression

Psychotic depression is a serious psychiatric disorder that affects approximately three million people annually in the United States. It is more prevalent than either schizophrenia or bipolar I disorder. The disorder is characterized by severe depression accompanied by delusions, hallucinations or both. People with psychotic depression are approximately 70 times more likely to commit suicide than the general population and often require lengthy and expensive hospital stays. There is no FDA-approved treatment for psychotic depression.

About Weight Gain Caused by Antipsychotics

The group of medications known as atypical antipsychotics, including olanzapine, risperidone, clozapine and quetiapine, are widely used to treat schizophrenia and bipolar disorder. All medications in this group are associated with treatment emergent weight gain of varying degrees and carry warning labels relating to treatment emergent hyperglycemia and diabetes mellitus. Weight gain and alterations in metabolic efficiency have been observed for many years in patients with abnormally high circulating cortisol. There is no FDA-approved treatment for the weight gain associated with the use of antipsychotic medications.

About CORLUX

Corcept’s first-generation compound, CORLUX, also known as mifepristone, directly blocks the GR-II (cortisol) receptor and the progesterone receptor. Intellectual property protection is in place to protect important methods of use for CORLUX. Corcept retains worldwide rights to its intellectual property related to CORLUX.

About CORT 108297

CORT 108297 is one of several potent, selective antagonists of the GR-II receptor that we have discovered and for which Corcept owns worldwide intellectual property rights. In in vitro binding affinity and functional assays it does not have affinity for the PR (progesterone), ER (estrogen), AR (androgen) or GR-I (mineralocorticoid) receptors.

About Corcept Therapeutics Incorporated

Corcept is a pharmaceutical company engaged in the discovery and development of drugs for the treatment of severe metabolic and psychiatric disorders. The company has two Phase 3 programs ongoing; CORLUX for the treatment of Cushing’s Syndrome and CORLUX for the treatment of the psychotic features of psychotic depression. Corcept has also developed an extensive intellectual property portfolio that covers the use of GR-II antagonists in the treatment of a wide variety of psychiatric and metabolic disorders, including the prevention of weight gain caused by the use of antipsychotic medication.

Statements made in this news release, other than statements of historical fact, are forward-looking statements, including, for example, statements relating to Corcept’s clinical development and research programs, the timing of the introduction of CORLUX and future product candidates, including CORT 108297, estimates of the timing of enrollment or completion of our clinical trials and the anticipated results of those trials, the ability to create value from CORLUX or other future product candidates and our estimates regarding our capital requirements, spending plans and needs for additional financing. Forward-looking statements are subject to a number of known and unknown risks and uncertainties that might cause actual results to differ materially from those expressed or implied by such statements. For example, there can be no assurances with respect to the cost, rate of spending, completion or success of clinical trials; financial projections may not be accurate; there can be no assurances that Corcept will pursue further activities with respect to the development of CORLUX, CORT 108297, or any of its other selective GR-II antagonists. These and other risk factors are set forth in the Company’s SEC filings, all of which are available from our website (www.corcept.com) or from the SEC’s website (www.sec.gov). We disclaim any intention or duty to update any forward-looking statement made in this news release.
Contact:

Caroline Loewy
Chief Financial Officer
Corcept Therapeutics
650-688-8783
Email Contact
www.corcept.com

From http://finance.yahoo.com/news/Corcept-Therapeutics-iw-1712742677.html?x=0&.v=1

What new treatments of tests have you tried?