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Michael B, Pituitary Bio

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May 2015 diagnosed
June 2015 ipss
Sept 2015 transsphenoidal surgery fail
January 2016 metyrapone
May 2017 mri and seen something but in a dangerous place
Aug 2017 gamma knife
June 2019 waiting for gamma knife to work

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Melissa, Pituitary Bio

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I was diagnosed with Cushing’s Syndrome about 4 yrs ago at 40 yrs old if my terrible memory serves me right.

I was told it was due to the steriods my Neurologist prescribed for Trigeminal Neuralgia and other severe facial pain. I was 110 lbs before the weight gain which ended up leaving me somewhere over 200lbs.

I had the moon face, buffalo hump, fluid retention, hair loss, blurry vision, thinning skin, confusion, anxiety, depression, terrible back pain, skin eruptions, hot flashes, and exhaustion etc. I struggled to stay awake and would fall asleep mid sentence.

The back and hip pain were so intense I couldn’t walk on my own so I had to use  a walker for over 2 yrs. Sometimes I still have to use it. I needed help getting to the bathroom. I was to weak to stand up in the shower. I was in bed 95% of the time. I was sick for a couple of years before my diagnosis.

Once PROPERLY diagnosed after many Drs made me feel as though this was all in my head. I was finally put on a long steroid taper, potassium and vitamin D. Fast forward 4 years after being told I had Cushing’s I am still debilitated by some of the syptoms.

Though I was told in the ER that my pituitary gland has started working again I am extremely weak and in pain. So much so I rarely get put of bed unless it’s for a Dr’s appointment. I have lost over 50 lbs but am left with purple stretch marks on my upper arms, breasts, stomach and hips. Also the skinny arms and legs with a fatty midsection. I am so frustrated with my body not allowing me to live a normal life.

Hopefully someone here can help me with some way to fight the fatigue, lethargy, libido and hot flashes that still remain.  I am taking  magnesium and vitamin D. and several other medications for a variety of symptoms but nothing in particular for the last symptoms I mentioned.  Is there anything one can do to have more energy? I become out of breath just walking across the room.
Many prayers and blessings to those suffering from Cushing’s.

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In Memory: Samantha Cohn ~ 2014

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in-memory

A Pilates instructor who suffered from a rare disease leaped to her death Thursday from her Upper West Side apartment — nearly crushing a horrified passer-by on the street, cops said.

Juilliard graduate Samantha Cohn, 34, crawled out a window in her 16th-floor apartment at West 71st Street and Broadway and jumped at 10:10 a.m.

Cohn, who was wearing workout clothes, landed on the sidewalk on Broadway and nearly hit a neighbor, Matt ­Kovary.

Her mother told investigators she had been diagnosed with Cushing’s syndrome, police sources said.

Cushing’s syndrome is a disease caused by exposure to high levels of cortisol. A tumor grows in the pituitary gland and causes serious side effects.

“I thank God for sparing me because I would be dead, too,” said Kovary, 59, who was on his way to the Upper West Side Copy Center on Broadway. “I heard a loud explosion. It was right behind me.

“I turned to see what the explosion was. The sight was so horrific. She was just at my feet. She almost took me with her.”

Stunned, Kovary headed to church after the tragic incident and prayed for the pretty victim.

“I’m so shaken from it. I went to church twice and prayed to God to save her soul. I could have been dead, killed an hour ago,” he said.

Cohn had gone missing for a week in April, prompting her worried mother to search for her and alert authorities, said a worker at her building.

“They found her in the hospital, supposedly for heat exhaustion,” said a doorman, Jacques Tassy. “When she came back [home], she seemed different. She wasn’t smiling as much.”

A woman who had been checking on Cohn regularly showed up on Thursday — 30 minutes after she had jumped.

“It wasn’t Samantha Cohn, was it?” the woman wailed. When she found out it was, she burst into tears.

The beautiful brunette spent more than 10 years as a professional dancer before teaching Pilates at Back in the Game Therapy near Rockefeller Center, according to the center’s website.

From NY Post

If someone you know exhibits warning signs of suicide: do not leave the person alone; remove any firearms, alcohol, drugs or sharp objects that could be used in a suicide attempt; and call the U.S. National Suicide Prevention Lifeline at 800-273-TALK (8255) or take the person to an emergency room or seek help from a medical or mental health professional.

Interview Archive: My Journey | Living with Cushing’s Disease

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It’s hard to say when my exact “journey” began with what we now know is Cushing’s Disease.  Both my Mom and my doctor believe I’ve had this for years, when I started having period problems, migraines and unexplained weight gain in high school.

I can safely say that I started really noticing/documenting this last round of health issues in the spring of 2007.  I can remember my first doctor’s visit regarding the onset of this in spring 2006, but the majority of my health issues really began a year later.  I’d always suffered from migraines, but only around my menstrual periods.  I took birth control to help with that, and it also helped regulate my periods for the majority of my adolescent and young adult life.

In Spring 2007, however, I started experiencing cluster migraines that were debilitating, blinding and just absolutely horrible.  I don’t usually have a primary care physician because I’m, for the most part, a really healthy girl.  But I started seeing a doctor to pinpoint the cause of the migraine headaches.  I had a CT scan which came back negative for any problems.  I tried different abortive medications to treat the migraines when I had them (Imitrex) and also preventive medications (Topamax) but nothing helped.  I’m not a big fan of popping pills and insisted that I find the cause of the migraines, rather than just masking them with an expensive, non-generic daily pill.  I cut back on caffeine, avoided certain trigger foods, changed the lighting in my house and in my office, had my eyes checked and even experimented with different birth control options, since estrogen can be a huge trigger for migraines in women.  Those lifestyle changes helped a little, but I was still having them.

Read more at My Journey | Living with Cushing’s Disease.

interview

Rachel was our guest in an interview on BlogTalk Radio Wednesday, June 3 at 6:00 PM eastern.

The archived interview is available through iTunes Podcasts (Cushie Chats) or BlogTalkRadio.

 

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Ida, Cushing’s Video

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Cushing’s syndrome is a rare disease which affects 65 patients in one million inhabitants of the EU. Cushing’s syndrome is a state where the body is chronically exposed to a high concentration of cortisol.

The signs of the disease are often overlooked. It took 14 years to diagnose Ida with the disease and to start treating it successfully. On Cushing’s Awareness Day, Ida emphasizes the importance of communication between the patient and the doctor.

Archived Interview: Rebecca D (Rebecca D), Pituitary Patient

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Hi Ladies and Gents, my fellow Cushies!

I am a currently mid 20s student living in Toronto, ON, CAN, with big dreams and a big heart. I have been part of this network for a while now and although I’m not always active on the site, I am always eager to spread the word, the love, the support for any of you!!! Just contact me, anytime!

As for myself, I began gaining weight and not being able to control it when I was in my late teens/early 20s.

In 2007/2008 I began trying to figure out what was going on with my current family Doctor with no success. My mother (xoxox) was the smart cookie who saw an episode of “mystery diagnosis” and said “THAT’S MY LITTLE GIRL IN A NUTSHELL!”

Ironically, my family MD at the time AND the one after that said that was a ridiculous idea and it couldn’t be that and simply DID NOT TEST ME.

Luckily, in 2009 when I moved to Toronto for my new degree, I met with a new Doctor who is an admitted “over tester”, however she did help steer me to my Endocrinologist for the diagnosis. It took nearly 2 years of testing, Dex-suppression tests, IPSS, vials of blood gone, MRI’s, CT’s, and too many jugs of 24-hour urine tests we had it narrowed to a pituitary cause but could not locate it on imagine or by approximate location (right, left, etc).

So the wait began as I was referred to my neurosurgeon and the Pituitary Clinic and their hospital until the day came and I went under!

After 6 months of excruciatingly long and painful recovery (which I know any of us who have gone, are going through, or are awaiting to go through where they mess with our signalling organs can understand) I was finally feeling back to myself, my cortisol was in its normal range after tapering off of oral hydrocortisone (oh the irony) and have been feeling pretty great since, Some weight has come off, my stripes have faded (don’t worry, if you look hard enough you can still see them) and I hope to stay on a positive road of recovery! *knock on wood*

I must say, I never expected to the one in a million… and it wasn’t the “one in a million” I expected to be…  You can’t change the past but you can make the best of your future. I’m proud to be a Cushie, I’m grateful to have you all as my “family”, and you are all “one in a million” as well 🙂

Be Proud, Be Strong, Be Fierce… but most importantly, Be Happy

Stay Beautiful xoxox

Archives are available at this same link after the interview and in the Cushie Podcast at http://itunes.apple.com/podcast/cushingshelp-cushie-chats/id350591438

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In Memory: Melinda Smith 1988-2014

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melinda-smith

 

Sadly, we lost another Cushing’s patient on Friday, May 9, 2014.  Melinda was a member of the Cushing’s Help message boards since Jun 24,  2007.

She was only 25 and leaves behind a young son and many loving family members.

Just last year she posted:

I’m not really sure where to put this post so I’ll just put it here under miscellaneous.

Last Friday was probably the closest I’ve ever come to actually dying. Luckily, my dad came downstairs to check on me. At some point Friday I completely blacked out and my dad found me totally unresponsive, barely breathing with foam in my mouth. The paramedics told my dad that if he hadn’t found me when he did I would of definitely died.

Nobody knows what caused this to happen. The hospital is trying to say that I overdosed on drugs, which is TOTALLY 100% untrue. Especially, since I hadn’t even taken my medicine because I was staying up with my mom to help her clean and move my stuff upstairs from the basement. By the time the ambulance got me to the hospital I was still unresponsive and my kidneys had shut down.

I don’t remember anything from Friday or really much from Thursday night. All I remember is waking up in the ICU at the hospital in the middle of the night with some grumpy nurses who kept asking me why I tried to kill myself. I just don’t understand where they got the idea that I was trying to commit suicide, all of my medication was accounted for plus some.

Another thing, now I’m on oxygen 24/7. Since Friday I have a hard time breathing so the hospital sent me home with an oxygen tank. I feel so old. I’m only 24 and I don’t even smoke yet I’m stuck with an oxygen tank. Something just isn’t right.

We talked with my regular doctor and she thinks that I might of had a stroke or maybe a seizure. I go see her on Wednesday. But until then I can’t do anything and have to be supervised at all times.

It’s really strange, I’m being treated like a baby but I feel like I’m 80. I just want to be a normal 24 year old and feel like my age.

 

Information from the obituary at http://www.stephenson-wyman.com/obituaries/Melinda-Smith/#!/Obituary:

Melinda “Mindy” Smith, age 25, of Harrison, passed away suddenly on Friday, May 9, at her home. Mindy had attended Farwell High School where she had been an honor student and participated in track and cheerleading. She graduated from Clare High School in 2005. She was currently attending college and was hoping to pursue a career as a Psychiatrist. Mindy talked often of becoming a doctor to help others who were struggling with Cushing’s Disease.

Mindy had been battling a fight with Cushing’s Disease since 2005. She fought hard and long, but unfortunately it was a fight that she could not win. She was loved by many, but will be missed by many more.

Mindy is survived by her son, Landon Smith, parents, Deb (Marc) Davis, Fred (Nola) Riggs, of Harrison, and Ralph Rydman, her special friend, Ryan Smith, siblings, Alisha Green of Farwell, Marrissa Rydman of Gresham, Oregon, Misty Riggs of Weidman and Mike Riggs and Seth Riggs both of Florida, her grandparents, Gary (Penny) Smith of Clare, Sheryl (Phil) Wentworth of Harrison, Janet Riggs of Harrison, and Jay Davis of Clare. Also surviving are many aunts, uncles, and cousins that will miss her dearly. She was preceded in death by her grandparents, Dawn Wiggins of Muskegon, Harold Riggs of Harrison, and Carol Davis of Clare.

Funeral services will be held on Wednesday, May 14, at 2:00 PM at the Clare Chapel of Stephenson-Wyman Funeral Home with pastor John Kasper officiating. Friends may meet with her family at the funeral home on Wednesday from 11 AM until the time of services. Memorials may be directed to the family.

Rest in peace, Melinda

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