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Natalie Stokes, Pituitary Bio

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A SINGLE mother suffering from a debilitating rare disease effecting her whole body has been left “disgusted and appalled” after being judged ‘fit to work’.

Natalie Stokes, of Saint Agnes Close in Studley, suffers from Cushing’s disease, a condition where the body produces excess steroid hormones. She had her disability benefits withdrawn eight weeks ago.

Natalie had her allowance withdrawn after an assessment carried out by the Department for Work and Pensions (DWP) in January deemed her ‘compos mentis’ and fit to work – despite both her GP and consultant brain surgeon providing a sick note.

The 33-year-old was diagnosed with Cushing’s last year after countless trips over eight years to see her GP.

She started claiming employment and support allowance (ESA) last January.

She said her condition, which has deteriorated over the years, is “changeable” and suffers fatigue, nausea, insomnia, irritability, memory loss, poor concentration and as a result depression.

Physically, Natalie is tackling life-limiting side affects which include, extreme weight gain, excess hair growth, a rounded ‘moon face’ due to fat deposits, thin skin, boils and severe pains from movement and incontinence.

She said she was “disgusted and appalled” at her benefits being withdrawn.

“Yes I can raise my hand above my head but I am by no means ‘fit for work'”, she said.

In February, she was instructed to visit Redditch Job Centre for an interview but shortly into the meeting an assistant told her there was no point continuing it as Natalie was too unwell to work.

Following the meeting, on the advice of job centre staff Natalie reapplied for benefits with depression but recently received a letter turning her down.

Natalie, who has a five year old son named Charlie, is currently undergoing treatment and doctors believe she has developed a second pituitary gland tumour at the base of the brain after recently having one removed.

Her father Thomas, has Parkinson’s disease and dementia, and despite Natalie’s condition she tries to help mother, Cathie, care for her dad but admits the pair “help look after each other”.

Prior to her condition she worked all her life.

She said: “I was raised with good work ethics and from two weeks after leaving school held down a full time job and even attended evening college to train and become a counsellor.”

“I have ambition and can’t wait to be well enough to work but the fact is at the moment I am not capable.”

She is now considering talking her case to tribunal.

A Department for Work and Pensions (DWP) spokesman said: “The decision on whether someone is well enough to work is taken following a thorough independent assessment, including all available evidence provided from the claimant’s GP or medical specialist. Anyone who disagrees with the outcome of their assessment can appeal.”

From http://www.eveshamjournal.co.uk/news/regional/15232560.Single_mother_suffering_from_a_debilitating_rare_disease_judged__fit_to_work_/

 

J, Pituitary Bio

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When I began this journey in 1999, I could only find one link for pseudo cushings on Google. I actually gave up finding anyone else like me until today. I was misdiagnosed several times before 2001, when I started seeing Dr. David Schteingart at the University of Michigan (two hours from my home). I was to the point where I was lactating, was growing facial and chest hair, was covered in acne from stem to stern, was passing out, had gained 30 pounds in one month – all around my stomach, was developing a hump on my back, was losing hair, had lost strength, memory, and self-respect, and some days couldn’t even raise my head.

With high cortisol, prolactin, and DHEA I was told I had PCOS even though I have never missed a period in my life. I was then told I had diabetes because I had had a high sugar read when I was pregnant in 1995. I was treated with birth control pills, anti-depressants, and diabetic meds. All of these things made me worse.

Finally, I had an MRI that showed a 2-3 mm mircroadenoma on my pituitary. Two more MRIs confirmed the findings. I was sent off to U of M to their pituitary clinic to find that my pituitary was fine. They sent me to their endocrinology department where I was diagnosed with pseudo cushings. I spent several years traveling to U of M monthly and began taking oral ketoconazole. Yes, that’s right, the same stuff that’s in Nizoral the dandruff shampoo. It took about two years on this stuff for me to develop an allergy. Dr. Steingart told me to choose: relief from cushings or relief from the hives that covered 90 percent of my body. I chose to give up the hives and have not taken ketoconazole since 2004. This is what I have come to realize: I cannot live in a stressful life. If I miss sleep, don’t eat well, or stress out at work, my cortisol sky rockets and I’m back to square one. This makes working almost impossible. My adrenals start off and don’t stop when I’m in a pressure situation. I am like a Southern Belle with the vapors pretty much all of the time. The only difference is: I want to live my life. I want to return to my career and be supermom; my efforts are continually thwarted by my body.

I’m anxious to hear if there are others like me out there in the world and how they have coped and made a go of it.

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Wanda G, Undiagnosed Bio

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undiagnosed2

 

I’m 44 years old and I have always been around 130 pounds but now weigh 283.

When I was around 25 I started having joint pain and started gaining weight and that is when I first started noticing my small buffalo hump. As the years went on it started gaining more weight, irritability, couldn’t fall asleep til 3am and very tired and week all the time and doctors couldn’t find anything wrong.

After my last baby I started having chronic hives, headaches every day, body aches, muscle tightness, numbness and tingling in my left foot, hand and upper lip. Most of that finally passed or slowed down. I could keep going but but fast forward a bit.

My buffalo hump is pretty large now, all my weight is in my middle and my arms and legs are thin. With my weight as high as it is you would think they would be heavy. My face is round and solid red, few red stretch marks on my stomach, telangiectas, memory loss, concentration problems, headaches.

Three years ago for almost a year I had severe weakness in legs and arms, trouble breathing and swallowing. I was diagnosed with lupus 5 years ago and polymyositis(all of my lab has come back normal & emg on my muscles that there is no damage so I doubt this dx)

Now I don’t stay up til 3 but my usual bedtime is midnight. Sorry for rambling but there are so many things that go on with my body it’s hard to get it all out.

I would like to know if anyone in Oklahoma City area know of a endocrinologist that knows a lot about Cushings because if I have it I think I’m cyclical.

 

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Sarah’s 14-year-old Son

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Fourteen-year-old son, who increasingly exhibits more and more signs of Cushings:

has had frequent illnesses: viruses, strep, pneumonia (two times) , & mono  x’s 6+ years

has had progressively worsening difficulty with learning “fuzzy thinking” and huge memory deficits x’s 4+ years

has had progressively worsening difficulty with emotional control x’s 4+ years

has had progressively increased fatigue  x’s 4+ years

has had progressively increasing central weight gain x’s 4 years

has had puffy eyes x’s 4 years

has had progressively slowed healing of insect bites and wounds on skin x’s 4+ years

has had easily bruised skin and acne x’s 4+ years

has had progressively worsening feelings of depression x’s 3+ years

has had progressively worsening feelings of anxiety with daily activities of life x’s 3+ years

has had stretch marks that faded from purple to flesh colored for 2+ years

has precocious puberty

has advanced bone age

has high testosterone levels

has been labeled as pre-diabetic

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Brian (Brian), Adrenal Bio

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In 2011, I realized I had Cushing’s Syndrome. I was a 30 year old male with several complications: swollen feet, swollen legs, stomach looked 9 months pregnant, hair fell out, memory loss, couldn’t sleep, couldn’t eat, diabetes, mood swings, depression, urination every hour during the night, bright pink stretch marks, etc.

After changing my doctors several times for misdiagnosis, I was finally tested for Cushing’s Disease/Syndrome. I contacted the National Institute of Health and doctors advised me to come in immediately. I survived 2 months living at NIH, while doctors ran several tests to determine if I had Cushing’s Disease or Cushing’s Syndrome. I had Cushing’s Syndrome and my tumor was found in my right adrenal gland.

After sucessful surgery, I did not have the energy to get out of the bed for almost a month. I was taking almost 10 pills per day including cortisol, high blood pressure medication, potassium, etc. I lost 40 pounds after surgery going from 208 pounds to 168 pounds and after 6 months, I was taken off all medication. I beat Cushing’s Syndrome and Diabetes!

Now, I am 32 years old. I am in great shape and finally got my life back. I do not have any complications. The only sign of Cushing’s Syndrome are the stretch marks and a scar from removing the tumor from my adrenal gland.

I just wanted to meet other people going through a bad disease and help out if possible. I am here if anyone has questions or just want to talk.

~ Brian

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Tracie (ktfisher91), Pituitary Bio

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I am 40 years old and recovering from Cushing’s.

I was diagnosed in May 2012 after several years of being mis-diagnosed and treated for the wrong diseases. I was finally able to have the tumor on my piuitary gland removed at Emory Hospital, Atlanta GA in January 2013, however, I had a CSF leak 4 weeks into recovery and had to go back for the repair surgery in Febuary 2013.

I gained over 80 pounds, developed high blood pressure, developed severe swelling all over but especially in my lower legs, I had to have my eyeglass prescription adjusted, had watering eyes, memory impairment, sleep apenea due to the weight gain, depression, anexity, lovely stretch marks on top of the lovely ones I had from having children, I had started developing the attractive buffalo hump between my shoulder blades to go with my lovely round and red face, and I am sure there are other symptoms that I had that I just can’t think of right now.

I am currently 8 months into remission, however, the recovery process has been a beast! I had very severe muscle fatigue and joint pain to the point that I could not get myself up out of chairs. I am just now able to make it up and downstairs without assistance and muscle pain. I still have some joint pain and overall fatigue. I can not make it much past 9pm without having to go to bed.

However, on a good note I have lost 40 pounds so far and I plan on loosing the next 40 pounds by this time next year! I did go back to work fulltime in April 2013 and I started my college classes back in August 2013. I did not let Cushing’s stop me from living and I have not let the difficult recovery stop me either.

It would have been easy for me to give up, but that is not the life I wanted!

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Melissa (MelissaZ), Steroid-Induced Cushing’s Bio

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Hello, my name is Melissa and I have Cushings due to long term Steroid use.

In April of 2012, I was diagnosed with type 2 diabetes and anemia.

About a month after my diagnosis, I started to have repeated sinus infections in my left nostril. After going through a number of antibiotics, my primary did a Cat-Scan which showed a growth the size of a quarter behind my eye.

I was diagnosed with a rare auto-immune disease called Idiopathic Orbital Inflammatory Syndrome (IOIS). Treatment for this was a high dose of Prednisone (steroid. 80mgs per day), which I was being tapered off of but because I was being tapered too fast, the IOIS relapsed so I went back on the high dose again and then tapered from there.

I have been off of the steroids now for 4 months and left with Cushings. I gained 120lbs which is the major of my complaint. I am moody, I do have irregular menstrual cycles, sore muscles (especially in the morning when I wake up), fatigue, memory loss, and a slight hump.

I don’t think my symptoms are as severe as the majority of people here, however, I am 318lbs and extremely misereable with my weight. I have started a nutrition regimen and hoping to drop at least 10-20lbs so that I am more comfortable to work out. I pray everyday that this will go away sooner than I am told it will.

Unfortunately, I am still having issues with my eye as well as problems keeping my sugar levels down. I’m up for any advice and will be more than grateful to share and compare stories with others.

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