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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 She had her disability benefits withdrawn eight weeks ago.

Natalie had her allowance withdrawn after an assessment carried out by the Department for Work and Pensions (DWP) in January deemed her ‘compos mentis’ and fit to work – despite both her GP and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She said she was “disgusted and appalled” at her benefits being withdrawn.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_/

 

Brenda B (BeBop), PCOS Bio

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I recently read an article in the NY Times magazine about Cushings, and a light bulb went off. I have an appt with an endocrinologist in March, but I’ve been to a renowned large clinic near my home in the early 1990s and was diagnosed with PCOS yet had no cysts on ovaries. I had abdominal striae, rapid wt gain in belly only, facial hair. They also found I had hypertriglyceridema – 1000+ when fasting. They could not put me on estrogen for the PCOS because of the lipid disorder, which they figured was genetic tho I never had any tests to find out why. So I went on Lopid, went on to grad school, shaved and plucked, wondered when the period would come.

I’m 53 now, got married in the mid 90s and we tried for years to have children, finally got pregnant in late 1998 and had a son in 99. Then I got hit with a terrible insomnia, sweating and anxiety and was treated for post partum depression. I did not feel depressed, just could not sleep despite my 9.9 baby sleeping through the night almost immediately. Didn’t sleep the two nights I was in the hospital after delivery. I stopped breastfeeding at 3 weeks and began a tragi-comedy of errors of regular health/mental health treatment, finally Zoloft did the trick as well as Valerian root instead of Ambien (which never worked for me) for sleep. The toughest point was when I hadn’t slept at all for 3 days. But that is another story. Anyway to make this already bad story worse, at 4 months postpartum, my mom died of stage 4 leiomyosarcoma, which she’d had in 1995 in her leg and it had metasticized to her lungs. She was a tough old bird and I think maybe had Cushings come to think back. (And thinking of my family history there may be something there with genetics, ie., MEN, with a sister with uterine fibroids, and two brothers with neurofibroma on their foreheads that were removed). Anyway, she refused all medical treatment after the leg surgery and elected to only have radiation in the leg area and never went to get checked out after that.

My son is now 14 and I’m apparently in menopause. I’ve had the return of the awful insomnia and the rapid heart rate at night. So I’m  back on Zoloft and valerian root immediately and made this endo appt today after reading about cushings here for two weeks.  My other conditions are hypertriglyceridemia (never determined if primary or secondary) for which I take Lovaza and Niacin and it’s down to about 300-400, which is not good. I tried Pravastatin but makes my muscle aches and constantnback aches worse.

In 2005 I had a terrible loose cough that the renowned clinic diagnosed as GERD after being misdiagnosed as asthma for 2 years by the community clinic. I can’t tolerate steroids as they make me an angry insomniac but took them as prescribed when they thought it was asthma. The big clinic diagnosed that as GERD (aciphex immediately worked on the cough) and I was also found to have NAFL (fatty liver), an enlarged spleen, and stil the high triglycerides.

In 2011 I had an uterine polyp (removed) and endometrial hyperplasia for which I get checked every year because I don’t want to/can’t take the progesterone. I would really prefer a hysterectomy to end that but obgyn is reluctant.

This year I’ve had a number of new symptoms: lactose intolerance, all over tendinitis (phy ther prescribed), incontinence and needing to go alot, leg and feet cramps, horrible back aches (member at the massage place), super fatique and muscle weakness (couldn’t even snap down the buckle on my ski boots last weekend and only lasted a couple of hours on the hill, and I love to ski) and blurred vision, eipscleris and early cataracts. I also have suffered from what is diagnosed as vasomotor rhinitis for YEARS, I keep lotion tissue companies in business. It’s been so bad this winter that I went to the doctor this week and was prescribed a steroid. Then I didn’t sleep last night. Oh and if I drink alcohol I get the same rapid heart beat and insomnia too, to add insult to injury. I still have the facial hair despite oh maybe a dozen laser treatments.

Oh, and since my 20s when this all started I’ve always considered myself “round shouldered” which looks to be a buffalo hump. :0

In reading all these stories I am worried that I’ve had Cushings my *entire* life not unlike some other folks here. I don’t trust doctors all that much becuase I had so a horrible time with “postpartum depression” treatrment. I was so angry after that that I spent several years on the board of a women’s reproductive mental health organization fighting to get the Melanie Stokes Act passed. I am too old and tired to do advocacy again but thanks for doing it and being here. I am reading about all you folk fighting for a diagnosis and I fear that I’ll be in the same boat. God bless you and hugs for all. Hang in there. I have. Sometimes barely.

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