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imbolcgirl (imbolcgirl), Undiagnosed Bio

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Originally posted Tuesday, December 23, 2008

I’m a 28 yo woman, and had been overweight growing up (Slavic diet!), but was able to take and keep the weight off with a sensible diet and excerise. I had viral meningitis in 2004 and ever since then, everything has gone south.

I gained 80-odd pounds in 14 months with no change in diet, and now several years later can’t stop gaining weight even on very restrictive diet/exercise regimens. I was tested for PCOS but came up with no cysts, am not currently diabetic but hoping to not become one, and tired, punky, and getting really really desperate. I do hit for most symptoms, excepting a prominent buffalo hump. I have worked in medicine (allied, not a dr or nurse) and am almost afriad to present my question of cushing’s to my dr, but I don’t know what else to do! I gain weight on 1400 calories a day, and exercised myself right into a torn-up A/C joint! I’m just so afraid to even ask for the tests because of “med-student’s disease” or being called a hypochondriac. . . and I do NOT want to have bariatric surgery unless I really really need it!

Currently, I am 130 pounds over my pre-meningitis weight, up all night drinking and running to the bathroom, have a seriously huge belly with lovely skinny ankles and wrists, stretch marks on breasts, belly, and underarms, look at me twice and I bruise, have weird temperature issues – my feet are numb, my hands turn blue, but if I go to bed under even one blanket I wake up soaked in sweat. I have a bit of the lovely “extra” hair, and haven’t been interested in the sensual side of life in months.

Things I do NOT hit for: I’m not quite a diabetic using home testing, close but no cigar, and I consistently have LOW blood pressure, usually. I’m on hormones, otherwise I have very long and heavy girly times, rather then short/light/nonexistent.

I see my doc somewhat suddenly tomorrow (I finally got completely frustrated being told to “just eat less” and decided to just ask for the testing.) This is the middle of nowhere, but my doc is not a bad guy by any stretch – but how do I ask without looking crazy? Can meningitis squoosh your pit enough to cause Cushing’s even? AM I just nuts?

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In Memory: Alena Renea Weeks Greenhill

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in-memory

March 30, 2007

AIKEN – Ms. Alena Renea Weeks Greenhill, 31, of Aiken, died Friday, March 30, 2007 at her residence. Funeral services will be held at 3:00 PM Wednesday in the Shellhouse-Rivers Funeral Home Chapel. Reverend Robert Rish will officiate. Interment will follow in the Clearwater Branch Baptist Church Cemetery.

Pallbearers will be Joshua Weeks, Jim Rutland, Morgan Weeks, Greg Smith, Jimmy Jones, and Charles Jones.

Renea was born in Aiken, a daughter of Gail Weeks, Aiken; and James “Randy” and Debbie Weeks, Aiken. She was a lifelong resident, and worked as a medical assistant at the Women’s Health Association.

In addition to her children, Olivia Ann “Libby” and David Randall “DJ” Greenhill, survivors are a sister, Dawn Rutland (Jim) Aiken; a brother Joshua Weeks (Melissa) Aiken; Nikki Weeks, Aiken, Danielle Smith, Aiken; Greg Smith (Maria), Aiken; Kasey Smith, Aiken; JerriLynn Smith, Lincolnton; a maternal grandmother, Joyce Weeks, Aiken; a paternal grandmother, Harriette Weeks, Aiken; twelve nieces and nephews; and her special friend, Jimmy Jones, Aiken.

A niece, Taylor Weeks, and a grandfather, Gene Weeks, preceded her in death.

Please visit Renea’s online memorial at shellhouseriversfuneralhome.com

The family will receive friends at the residence of Joshua Weeks, 2334 Wire Road, Aiken on Tuesday from 12-5 PM and from 6-8 PM Tuesday evening at Shellhouse-Rivers Funeral Home, Inc., 715 East Pine Log Rd., Aiken, SC.


From my email:

Mary, I got a call tonight from Renea Greenhill’s mom who told me that Renea died Friday night. Renea was from Aiken, SC and was on the board until she did not have a computer anymore. She had tried to get groups together in SC. She had left a note that if she died that her mother was to call me and I was to let everyone on the Cushing’s board know of her death. Her mother had seen her on Friday night and talked with her later. Her boyfriend came over and found her on the floor. He called her mother who told him to call 911. He did and her mother got right over there. 911 got there, but did not attempt to revive her and she was to be an organ donor and the organs could not be used. She was dead. An autopsy found nothing wrong with her physically. I told her mother that I bet she died of an adrenal crisis and told her mother to call the coroner to have them do tests for that. She was very appreciative of my thinking of this and was going to call. Renea had been to see Dr. Laws for surgery several years ago. She ended up with meningitis from surgery there. She ended up in critical care at the Medical University of SC. Later had her adrenal glands removed. She had “beat” cushings her mother said. She had lost over 300 lbs. She has two young children who are now without a mother. Her husband had divorced her several years ago, so she was rearing the children as a single mom. Please pass this on to everyone for me for Renea at her request if this happened to her. She loved her Cushing’s friends. Below is her obit. Memorials are to be made to the Cushing’s group.

On the message boards:

• I knew Renea – I met her the Tennessee CUSH Conference. What a shame sad.gif

• I am sorry to hear of Renea’s passing…thank you for sharing with us. Condolences to her family, friends and loved ones.

• So very young — so very sad.

• My Goodness, she was so very young. This is a startling reminder how serious an adrenal crisis can be. Thank you for carrying out her wishes to let us know.

• Oh my…

I talked with Renea a few months ago. It may not have been adrenal crisis, but it may have, as Renea, after her BLA, didn’t need replacement. She hadn’t taken hydro for some year(s), and yet her cortisol was always “0”. The doctors would just scratch their heads.

Thanks for posting Mary. My prayers are with her and her family.

• I am so sorry to hear about this. My prayers go out to her children and her family. What is scary to me is the fact that, considering her history no one there thought to check to see if an adrenal crisis was responsible.

• How terribly sad. And the two young kiddies too. She sounds a remarkable woman. Very sad indeed.

• I am absolutely heartbroken over Renea’s death. She was far too young and she already suffered so much. I hope her kids know how much she loved them. I have been struggling with my own health issues lately and her death brings home just how dangerous our lives can be.

I hope she is at peace and that her family is able to cope with her death. I am so very sorry that we lost such a great person. Renea was a great source of strength for me and I will miss her dearly.

• Very sad news! My thoughts are with her family and her children.

• Thoughts with her family and children. Her mother must be devastated. I hope she can read the posts and know she’s thought of.
Very sad for these children to lose their mother at such a young age.

• My deepest condolences to her family and friends.

• How very sad. So young, and had already been through so much.

My thoughts are with her family & friends

• So very sad. So young , & so much still ahead of her.

In my prayers

• I wonder if they checked her for Nelson’s also? She looks very tan. My deepest condolences to her family and friends.

• Such a sad ending to a beautiful life. Sending peaceful thoughts to her family..

• It is very sad to fight that hard… and then the family does not know why… my thoughts and prayers are with them… It breaks my heart to think that she had to suffer so much, but she must have been such a strong, brave person to go through it. My prayers are with the family..

• How sad – she was so young. My sympathies to her children and all of her family.

• I’m so sorry to hear that another Dear Cushie was lost, I remember Renea from the old board mostly and remember how, very sick she was after her surgery, as others said she was way too young, and I’m sure her family and friends will miss her so very much. Someone we have to get all doctors on board to realize how very serious this illness is, not just a few who are out West, we all know they are good doctors, but we need some good ones in the Midwest, in the South, in the East, I know there are some, but we need more pit centers and more pit spealist on understands the devastating and life or death realality some of these pituitary tumors or adrenal tumors can cause.

I’m so sorry to learn on this happening to a dear cushie I remember from the boards.

• My prayers to her family. May God bless and keep her children. I can’t imagine how hard this is for them.

Amanda, Undiagnosed Bio

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golden-oldie

 

I have been battling sickness for about a year and half now. It started with my gaining weight pretty rapidly (about 20 lbs. in a month-month and a half). I’ve never been super strict about my eating or exercising but I don’t eat a lot of junk food – don’t buy any chips, soda, cookies, etc.) I also do remain pretty active in the work that I do as an elementary teacher. I’ve never had a problem with my weight before and this particular summer I was teaching 3 sections of dance so I was getting plenty of exercise.  I told my family practioner about the weight gain and he told me that metabolism slows down as you age. Ok. I was 26 when he said this and my metabolism must have went down to 0 for me to gaine so fast! I decided to just be more concious of what I ate and did.

As the months went by, I went on a business trip to Boston. During this trip I was inrcedibly fatigued and felt awful. I thought perhaps I was coming down with something and was put on antibiotics that did nothing to help. In August of 2010 I began to have debilitating headaches. I could not get the headache to go away with any over the counter pain reliever and ended up going to a doctor who diagnosed me with migraines. I tried a few migraine medicines with no luck and had a CT scan that showed nothing abnormal. I was then referred to a neurologist.

I mentioned the weight gain to the neuroogist who thought it was odd that I would gain weight so rapidly, but he pretty much dismissed it as a symptom and said I was getting headaches from overuse of medication. I knew that could not be right, but thought I’d try just taking nothing for a while to see if it helped. It did not. The same neurologist then recommended physical therapy, which helped ease the pain but did not take away the headaches. His final thought was that I was depressed and put me on depression medication.

During this time I was working as a teacher and missing work quite often. I felt awful every day. I continued to gain weight, feel fatigued and weak, have mood swings and began developing stretch marks and acne. I always had wonderful skin and it seemed no matter what cleanser I used, I couldn’t control the breakouts.

I saw another neurologist that was recommended by a parent at my school. She scheduled me for an MRI and a lumbar puncture. My pressure came back a little high during the lumbar puncture and the MRI was fine so she diagnosed me with Pseudo Tumer Cerebri. I took medication for this condition, but ended up with no relief.

I ended up spending a week in the hospital because I couldn’t stand the pain in my head and I was so emotional over the whole experience of not having any answers. They pumped me full of pain medication and migraine drugs. At the end of the week when I still had no answers, I ended up going to see a neurologist that was a headache specialist.

The headache specialist diagnosed me with meningitis. No tests but I got a diagnosis based on my story. She put me on steriods. I began to feel better for a few days. I returned to work and thought I had finally found my answer. Then everything came to a screeching halt and I began to feel awful again. The headache specialist was still convinced it was meningitis and said I was just more susceptible to migraines from the meningitis. I again went through a whole gamot of migraine medications to no avail.

I ended up leaving my job and moving close to my family so I could have support and people to help care for me. I returned to my family doctor who decided to do some blood tests. After running the blood tests, my doctor said that my cortisol level was high and I might have cushings which would explain all my symptoms. I had never heard of Cushings so I began researching it. Once I read the symptoms and others’ stories of how they felt and what they went through I was so sure that here FINALLY was my answer. The doctor did a low dose dexamethasone test which came back with normal levels and it was decided I did not have Cushings.

I was devestated. Not that I wanted to have this illness, I just wanted an answer and thought for sure this was it! I even asked my doctor to retest me which she would not do.

I went to see another doctor. I began going through migraine medications again, acupunture, chiropractor, etc. to find some relief. I finally brought the idea of Cushings to this doctor. She ran some blood tests again. Everything came back with normal levels except my potassium was low. Even though my blood didn’t show it, I’m still convinced I have Cushings and my doctor agreed to send me to an endocrinologist.

I have an appointment on Monday with Dr. Findling in Menomenee Falls. I found him on this site as one of the ‘helpful doctors’. I’m hoping that he can finally diagnose me and I can get on the road to recovery.

I miss my life. I’ve lost friends due to this illness. My marriage is suffering. I cannot work. I basically have no life at all because I rarely feel well enough to do anything and no one understands. Not to mention the psychological toll being sick with no answers has on a person as well as watching my body change so much and not being able to do anything to control it! I want an answer and I want to finally know what I can do to help myself get better.

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Jordy, Pituitary Bio

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Jordy is a British man who has been dealing with Cushing’s and many surgeries.

 


Jordy-Cernik

He finds rollercoasters boring, barely broke a sweat zip-wiring off the Tyne bridge and even a parachute jump did not raise his heart rate.

Just a few years ago even the thought of daredevil exploits would have terrified him, but now Jordy Cernik is frightened of nothing.

While that might sound an ideal scenario, the 38-year-old’s new-found bravery is actually the unexpected side-effect of surgery for a rare condition.

Cushing’s Syndrome resulted in the dad-of-two having an operation to remove the gland which produces adrenalin, the hormone which makes us feel scared.

He says: “I would never have had the guts to do any of this, but now nothing fazes me. I’m up for anything – I’m even thinking about doing a wing-walk on a plane too.

“I nearly did a bungee jump a few years ago, but I just couldn’t do it.

“Now I just take whatever is thrown at me and if a challenge helps me raise money for charity, the more daring the better.”

Over the past four months he has completed the parachute jump and zip-wired from the top of Newcastle’s Tyne Bridge and now he is getting ready to complete the last of a trio of challenges – next month’s Bupa Great North Run.

“The doctors didn’t tell me this could be one of the side-effects of the operation,” says Jordy. “But then the condition is so rare I don’t think they know everything about Cushing’s yet.

“Doing the skydive was the ultimate test. I thought that if I was ever going to get scared again then that would be the moment.

“But as we took off in the plane I felt nothing, and when I edged towards the door to jump I felt nothing, and even when I leapt out and pulled my parachute, I didn’t feel scared at all.

“It can be quite frustrating as well though.

“The first time I realised I had changed was when I went on the rides at a theme park with my kids and I just didn’t feel a thing. I just sat there, bored.”

However, the last of his hat-trick of challenges, the Run, will require him to push through the ever-present pain which he has endured for years as a result of Cushing’s.

Britain’s biggest mass participation event, for which The Daily Mirror is a media partner, takes place over a 13.1 mile course from Newcastle to South Shields.

But the syndrome has left Jordy, from Jarrow, near Newcastle, with arthritis, back problems and brittle bones. Worse still, the absence of adrenalin means he now lacks one of the body’s natural painkillers.

“I’m always in pain,” he says. “I’ve just had to learn to zone it out day-to-day and I’m going to have to do that even more when I’m on the run.”

Cushing’s affects around one in 50,000 people in Britain.

It causes a malfunction of the adrenal and pituitary glands which means increased amounts of corticosteroids are produced – often leading to massive, irregular weight gain.

In just three years 5ft 8in Jordy ballooned from 11st 5lb to almost 17st.

While his limbs remained slim, the former Territorial Army recruit saw the pounds pile around the major organs in his torso and head.

“I went through years of hell and I can only describe it as living in someone else’s body,” says the part-time radio presenter and events host.

“I developed this big round moon face and really quite large man boobs, which was so embarrassing.

“But there was absolutely nothing I could do about it. I could go to the gym six days a week and still couldn’t lose any of the weight.

“One of the worst things was that people would stare.

“Sometimes they’d take the mickey – often to try and make me feel better, by making light of things – but it would almost always hurt my feelings.

“And my career as a presenter suffered. I tried to play up to the character of being a big, jolly chap but I always felt I was too fat for TV, which is what I would have liked to do a lot more of.”

But it was the effect on his home life with wife Tracy, 43, and daughters Aimee, seven, and four-year-old Eive that for him was far worse.

“I had other really difficult symptoms which included profuse sweating which meant I couldn’t even hold my kids without wrapping them in towels first,” he says.

“Anyone who has children knows how hard that is, not to be able to do normal things. I often used to be in tears.

“Another symptom was extreme grumpiness, so I would find myself suddenly getting really angry and just exploding at them, plus I was always too exhausted to play with them. It was terrible.”

Jordy believes he can trace his symptoms back 15 years although his Cushing’s was only diagnosed in 2005.

He had visited his local surgery with a string of complaints, but by chance saw a different doctor one day and the syndrome was diagnosed.

“I don’t have any ill-feeling about that,” he says, “because the syndrome can be tricky to spot, partly because it is so rare.”

He went on to have both his pituitary and adrenal glands removed but needed a total of seven operations between 2005 and 2010 and not all went smoothly.

During one to remove his pituitary gland, which is inside the skull, the lining of his brain burst due to the stress of repeated surgery.

And while removing a rib to access the adrenal gland in his torso, his lung was punctured.

That wasn’t the end of the complications. He later developed severe meningitis and ended up on a life-support machine.

“But I still consider myself lucky,” he says. “The doctors told me, ‘You died twice really, you shouldn’t even be here’.”

Things have begun to look up in the past few years, however. The Cushing’s is in remission and Jordy has lost four stone.

His life hasn’t returned to normal entirely – he still has to take 30 pills a day, a cocktail of painkillers and hormones, plus drugs to slow the corrosion of his bones.

He has also been diagnosed with another rare condition, sarcoidosis, which creates nodules of irregular cells in the body and can cause serious complications. He’s convinced he has always had it but it has lain dormant until his body was at its most vulnerable.

At present the nodules can only be found on his skin and he’s being monitored to ensure that it doesn’t spread to his internal organs.

Thanks to the surgery, his life has improved enormously since 2010.

In July he had a breast reduction op which not only improved his appearance but also removed the dangerous accumulation of fat around his heart.

Part of this new chapter involves taking part in the Great North Run and raising money for the Cash for Kids appeal run by his local radio station Metro Radio.

The appeal aims to help children and young people in the North East who are disabled or have special needs, or those who suffer from abuse or neglect.

Jordy’s fundraising goal is a relatively modest £1,000, but for him joining the half marathon’s 56,000 participants on September 15 will be as rewarding as hitting his target.

“I really don’t know if I’ll be able to complete the course.” he says. “But I’m looking forward to it and I’m going to give it my best shot.

“Not feeling fear may feel like the power of a superhero, but what I really need for the Great North Run is superhero strength.”

The Bupa Great North Run is Britain’s biggest mass participation event and is organised by Nova International.

It will include world class athletes Mo Farah, Haile Gebrselassie and Kenenisa Bekele – plus 56,000 other runners.

The event is live on BBC One on Sunday 15th September between 9.30am to 13.30

For more information, visit www.greatrun.org

From  http://www.mirror.co.uk/news/real-life-stories/jordy-cernik-man-unable-fear-2208002#ixzz2cny6XeFr

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