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awareness

On Dec 12th, I am speaking at a sold-out event and telling half of a funny story, then posting it on YouTube, To hear the rest of the story people have to go to my website which is all about Cushing's disease. Every day I see people who I am certain have Cushing's but don't know it. I want to reach these people and the general public. What title can I use for my video? I need your help with this. The story is much like Abbott and Costello's Who's on second, what's on third routine. But there has

NotSoCushie

NotSoCushie

alcohol

Hi Cushies: Without alcohol, I felt like I was walking around in a brain fog dream state. Did anyone with Cushings disease notice that when they drank alcohol they could drink a much larger amount than ever before without getting a buzz or being drunk?  

NotSoCushie

NotSoCushie

Carpal Tunnel?

Always something! I woke up last night with numb tingly wrist and ring finger.  In the last few days, I've had to move my watch band out a notch. I've been on Omnitrope .3 growth hormone for a couple months and just finished my second cartridge.  Emailed Dr. Salvatori for advice. A couple weeks ago it felt like my wisdom tooth lower left was coming in and I generally felt like something was happening with my jaw.  That's evened out now. Naturally, my second shipment (2 m

MaryO

MaryO

Back on GH

After an 11 year break due to kidney cancer, I went back on Growth Hormone (Omnisource) just over a week ago.  I'm not feeling a whole lot different yet but I am keeping a journal on Carezone.  If anyone is interested in following that, please PM me your email address. I may be going off it again if things don't improve - I'll give it 2 months to see improvement but after that, no.  I really can't afford or justify the copay of $535.

MaryO

MaryO

It came Back

I am a very late entry. Shortly after my 5th anniversary post surgery 2005, in the 6th year, I knew something was "different". That old sense of dread returned. At the 6th anniversary checkup, I popped a "high" on urine cortisol. But it was a one time thing, not repeated in a "sequential lab". Over the next two years, my blood sugar went haywire, not controlled by higher and higher doses of metformin.  My weight began creeping up from 150# to just over 180# when the blood labs confirmed in the 8

FerolV

FerolV

Possible Cervical Cancer and Cushing's Syndrome

I just received a call from my pcp that my pap smear came back with cancer cells possible pre cancer. I have possibly Cushing's Syndrome that I have been going to to an Endocrinologist for still undiagnosed. I researched and found that Cushing's Syndrome can result from Cervical Cancer due to ectopic ATCH secreting tumor. I go for an more invasive biopsy next Monday. I am going to stay positive note matter the results.

Crystal34

Crystal34

Cushing's poem

These doctors think I'm crazy fat and just plain lazy. I try to explain my symptoms but my mind is foggy and hazy. I now have bad acne and my skin is an oily mess. Doctors say it's hormones and stress. It's been one exhausting test after another. I pray my diagnosis isn't much further. I'm tired of looking like a pumpkin head. Doctors say I'm not cushingoid looking enough instead. For me these last two years have been a nightmare. I'm grateful for all the supportive Cushies who

Crystal34

Crystal34

Cushing's poem

These doctors think I'm crazy fat and just plain lazy. I try to explain my symptoms but my mind is foggy and hazy. I now have bad acne and my skin is an oily mess. Doctors say it's hormones and stress. It's been one exhausting test after another. I pray my diagnosis isn't much further. I'm tired of looking like a pumpkin head. Doctors say I'm not cushingoid looking enough instead. For me these last two years have been a nightmare. I'm grateful for all the supportive Cushies who

Crystal34

Crystal34

Cushing's battle

Hi, I have both on over two and half years quest to find out what is causing strange symptoms. I didn't have insurance because I lost it in my divorce. I been running to every doctor I could and even an Dermatologist for strange skin infections and severe acne. This has been a nightmare. I never heard of Cushing's before this. I am undiagnosed still. I been seeing an Endocrinologist and all cortisol levels,hormones, head CT,abdominal ultrasound, adrenal glands MRI normal. Now unknown mass i

Crystal34

Crystal34

its been a while

I had to post because so much time has passed. Its crazy to think I'm 21 years old now, and when I was 14 I thought I was dying. Here I am, a pre-nursing student ready to tackle the medicine field with great passion to help others who went through I went through. I hope to help people suffering from their confusion, and self deprivation due to hypercortisol secretion, stress, exhaustion, and sadness. I am so ready to support others, and heal others Im so thankful I survived.

Lynn93

Lynn93

From First symptom to diagnosis and Post Surgery !

From First Symptom     I am Deb, a 50 yr old woman who has been well relatively unwell for the past 2 years, mega worse in the last 6 months ( i havnt worked for 6 months now ). I have been to so many doctors had so many tests. The result was always increase meds, then increase them again. You see I have diabetes. My parents both have High blood pressure. So it was not unreasonable for me to have high blood pressure as well. 2 yrs ago i started Vomiting ( thought it was gastro, didnt bothe

Deb33

Deb33

Bill's Reign of Terror, Part I: The Sneak Attack

I first became aware of Bill on November 6, but now that I know about him, I am pretty sure he officially arrived during the summer of 2012. Since then, I suffered from depression, acne, menstrual problems, 30lb weight gain (while training for a marathon), and high blood pressure. Best of all, Bill has taken up residence on the back of my neck and created a little colony on my belly too.   I always been pretty healthy (except for hypothyroidism) but in the last year, I had seen several dif

sns72

sns72

The ups and downs...

Oh the joys! Just got a letter from my Endo saying 'we will review you in next clinic'. My first Dex test she said was boarder line at cortisol level 50.. but my last one they have put 'perfectly normal with a cortisol level of less than 18'. So it would seem we are back to the drawing board and I have to wait til the 31st May to speak to anyone again to see what can happen next!   Well, decided I am going to put my thoughts in a letter to see if at least I can stop them from saying "we are

Squeak

Squeak

I have a guardian angel.

After yesterdays emotional outburst (sorry), today I found that my symptoms just seems to feel so much worse. My arms ached while trying to write a flipchart board, I felt bloated, legs pitted, so tired I felt like I had been up all night partying rather than curled up in bed reading a book, really blaaah and kinda lonely with the feelings... and in pops someone who has been through what I am going through, got diagnosed and has had the operation!! This is the 3rd time, when I have been having

Squeak

Squeak

Venting My Spleen....

Its been a strange old day and I have had thoughts going round and round my head, so thought perhaps if I wrote them down then maybe that would help. Then I wondered where to write them, and here was the first place that came to my mind as I know that though I am writing this for myself, if anyone else reads it, I know they will understand!   I realised this morning that this time last year I told a good friend to go away and leave me alone. I thought he was not being a good friend, though

Squeak

Squeak

Buffalo Hump ... just a coincidence?

I clearly have a buffalo hump and have noticed it develop over the past few years. I just compiled a photograph collage of pics of me over the last few years, including one with my buffalo hump. I have a small pituitary tumor that was just confirmed via MRI that is secreting prolactin but my endo said that it should not cause me any symptoms and is not going to treat it. (I am getting a second opinion ... and another endo).   I have so many signs of Cushing's disease/syndrome, except that I do

JustCurious

JustCurious

Cushings is a life changer

Cushings syndrome has changed my life in many ways. I used to think I was trapped inside a suit that I couldn't get out of when I was gaining weight so quickly. When I found out that I had Cushings Disease, I was kind of relieved in a sense that this is another step up my hill, the hill being Cushings, and when I got to the top, all I had to do was slide down. It took a long time to get up that hill! Blood work, MRI's talking to what seemed like a MILLION surgeons that just scared me instead of

Emma12

Emma12

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