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Heather P (Heather), Undiagnosed Bio

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undiagnosed 5

 

This is about my husband…2010 diagnosed with rheumatoid arthritis (one day he was fine, the next day he was in agony type onset). Was placed on methotraxate, prednisone, humera, actemra, etc. for the next 4 or 5 years. None of the bilogics worked for more than a month. Pred and pain meds became a mainstay for about 5 years. I started to question the accuracy of the diagnosis and was patted on the head and basically told to forget it and go my merry way and accept it. We were always told the bloodwork “was fine. no issues with the exception that when Neal hurt, his inflammatory blood factors were low..which was odd but it is his body”. It was left at that. We basically gave up the Rheumatologist in 2015 as it was getting us nowhere and nothing was changing. Something was still wrong.

Late 2015, his weight gain went crazy. He developed moon face, the traditional hump on the back of his neck, huge adbdomen with tons of stretch marks everywhere, no energy, listlessness, severe pitted edema, paper thin skin, spots all over his legs, rash on his chest, pressure on his chest and lungs when laying down, sleeping all of the time (as in 2 seconds after he hit is recliner), sleeping solely in the recliner, lower extremety severe weakness, nausea, etc. This led to congestive heart failure in Jan 2016 due to the extreme fluid retention. Placed on lasix, indomethacin, blood pressure meds. Cleared by heart doc two weeks later to return to work.

Still no results…..still spiraling downhill. March 2016 Get steroid injection in the knees as he cannot walk due to the weakness, swelling and pain. Vision issues are now added to the list of continuing issues.

June 7, 2016. Go to another doctor out of state and get more bloodwork done as we cannot take it anymore. They take more blood. Doc does comment on his paper thin skin and mentions that is usually from steriod use. Neal passes out and has to be taken out of the office in a wheel chair as he cannot walk due to the extreme weakness and pain. Increase lasix to 2 a day and get prednisone.

I have finally had enough. I cannot stand seeing my once vibrant active husband just laying there…just existing….just barely…. I make a comprehensive list of all of his symptoms, make a graph of his blood work results from 2010 to present…what I found was astonishing…his results were NOT ok. I took him to the local doctor and pleaded and begged for him to figure out what is wrong with my husband. I initially go thte ole “I don’t want to step on anyone’s toes” etc. as we had just gone to the new rheum. doc a week ago. He ordered a new echocardiogram and it was clear. Added new drug. Neal had an allergic reaction and was put on high dose (50 mg daily) of prednisone combined with zantac and zyrtec for 3 days.

A week later, his bloodwork came back…gout, hypothyroid (based on symptoms), severe internal infection. Add more meds.

Go to eye doc and get the diagnosis of cateracts in both eyes. Doc felt it was due to prednisone due to the rapid onset. Surgery scheduled for next week.

In the meantime, Neal has gone even more downhill….now he feels like he periodically fractures a rib, a finger, etc. Even more stretch marks are present. He is listless and cannot function. He cannot walk. Add decreased urine output even on the lasix). He just lays there stuck in a shell. He has missed so much work in the past 2 weeks. He lives as one would in a nursing home…I take care of his daily needs. He cannot.

I go back to doing my research online. Cushings Syndrome pops up…OMG….Between all of the biologics, the up and down on the prednisone, zyrtec, steroid injections , etc. has sent him into the major downward spiral that he is experiencing…..Steroid induced Cushings along with hypothyroidism (might even be hashimoto’s..too soon to tell). We came to this conclusion at 2 am this morning. To further prove this, he took an additional 10 mg of prednisone immediately. I know…he refused to go to the er…he wanted to prove it one way or the other. (I did tell him that I was gonna invoke my medical poiwer of attorney and have him taken out by ambulance on tuesday if not sooner if this didn’t have some impact). Well…he can WALK this morning. He actually went to the bathroom to use the toilet….THAT is a huge deal to us. He is in pain but he can MOVE!!!! He went to work this afternoon as well. He has to have his cateract surgery so he can see to work (we will lose our home…company house…and everything else if this is not done asap). That is his priority. Once the surgery is done, we will be headed back to Nebraska to approach the doctor there about our findings relating to Cushings Syndrome.

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Candy (Candybar11), Pituitary Bio

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pituitary-surgery

 

I was diagnosed with Cushing’s in 1997.

I had never heard of it before my doctor said he thought I might have Cushing’s. I went right to the library and read about the disease, they literally could have used a picture of me to display the physical characteristics.

After some testing I went to the NIH to verify I had a pituitary tumor. After it was confirmed I was scheduled for surgery. My surgery was successful to a point. They said a small part of my tumor could not be removed. My recovery went fairly well!

I began to lose weight and a lot of my symptoms went away. However it has been a long road. I still have some symptoms that never went away, I still sweat a lot, body aches and pains (now I have RA, fibromyalgia) memory not great, never lost all my weight either. My labs all say most of the time I am in normal range but I do not feel cured! But new doctor says numbers are fine you are fine.

I have been disabled since 1993, I had a lot of health issues that later were all related to Cushing’s. This disease in my opinion is never cured!

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Gabby (nielk), Steroid-Induced Cushing’s Bio

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steroids

 

I have been diagnosed with rheumatoid arthritis in 2013. I have been on methylprednisolone for about a year and a half now and have all the symptoms of Cushing’s Syndrome.

My doctor wants to get me off the steroids but so far none of the other RA medications that I have tried have worked. It has been pretty frustrating.

I can’t get off the steroid but it is making me sicker in other ways.

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Leah (Lele), Undiagnosed Bio

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I am a 34 year old woman, not yet diagnosed, but suspect Cushing’s.

When I came across this website, it was like other people writing my life story.

I was diagnosed with hypothyroidism 15 years ago, with depression about the same time.  Once on thyroxine, I improved.

About 8 years ago, I started gaining weight, especially around the stomach.  Then as time passed, other symptoms appeared.  The depression was coming back worse than ever, despite increased doses of anti-depressants.  I suffered with extreme fatigue, joint and muscle pain, shortness of breath and rapid heart rate.

I had tests for Rheumatoid Arthritis, Lupus, Fibromyalgia, Latex sensitivity, ECG and echocardigram, stress echocardiogram, chest X-ray, lots of blood tests.  The only thing abnormal was low iron.  I tried iron supplements, which do not agree with my stomach, so had to abandon.

Since then, I have pretty much struggled with further symptoms, the latest being the red stretch marks, the buffalo hump, fat on my shoulders (makes it hard to carry shoulder bags – they just slip off!), red, hot, puffy face, excess sweating, even in cooler weather, night sweats, pins and needles in arms, cramps in legs, high blood pressure, bruise easily, sores slow to heal – and that’s just the physical symptoms.

I am so depressed and low on self-confidence that hardly go out anymore, don’t have many friends, and had to stop working as nurse, which is the job I love.

I finally got my local doctor to send me to an endocrinologist in March this year.  She did an ultrasound of my thyroid (showed a tiny nodule) and ordered a 1mg dex supression test.  When the dex test came back negative and I went back to see her, I just cried my eyes out.  She referred me to see a psychiatrist, and said she was done with me.   The usual – you can’t have Cushing’s, its too rare.  No urine tests, nothing.

I called the Pituitary Foundation in my state who are really helpful, and gave me loads of information. The lady mentioned cyclical Cushing’s.  But they can’t tell you which doctor who can help you, it is different in Australia because you need to be referred by your local doctor, and they have no idea who can diagnose Cushing’s or what tests to order.  So now I have really lost hope of getting a diagnosis, it like fighting everyone all the time, just to be taken seriously.

There are days when I have no fight left in me, and wonder how bad it is going to get, will I get diabetes, heart disease?

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