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Dana, Undiagnosed Bio

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Well, I’m 29 now and still undiagnosed. If Cushing’s is what’s wrong with me, I have had it for quite a long time. I gained a lot of weight (60 lbs) the last 2 years of high school (17-18 years old). I lost 30 lbs at age 19 (I just didn’t eat much) and have since gained 70 lbs.

But, I really wonder if this all began when I was a child. However, I was tall, and Cushing’s is supposed stunt growth, so who knows. I was always the tallest kid (male or female) until about seventh grade, and ended up being 5’11”. When I started school I suddenly went from a fairly normal weight to having a giant, hanging belly with stretch marks. I remember by first grade (age 7) wondering where all this fat had come from. My parents blamed it on sitting in school all day, since I was an active child and ran around all day when I was younger, and we ate healthy meals. So, my parents put me in every sport possible: softball starting at age 6, basketball (2 teams) at age 9, soccer at about age 9, volleyball at age 12, golf at age 15. I would go on numerous diets, with the Scarsdale diet working well (high protein, very low calorie, but hard on my gallbladder), and I lost a lot with a 1500 calorie/day low-fat diet. In middle and high school, I was doing 2 hour sports practices (mostly cardio the entire time) every day, year round. I think my face has looked round since elementary school, and pictures from 2007 show a buffalo hump. I sweat more than everyone else (my Dad’s theory was that I developed more sweat glands because of all the sports).

My periods have always been irregular (starting at age 10), sometimes with 4-5 months in between, until I started birth control pills at 19 to regulate them. We figured it was because of stress or all the sports. I had fairly bad acne from about age 12-19, and since then usually still have a few zits, although now I have more body acne. My stretch marks are everywhere, along with spider veins, but the stretch marks are only pink and about 0.5-1 cm wide at their worst. Freshman year of college, I developed a cyst at the base of my tailbone the got horribly infected (I could barely walk) and it had to be surgically removed, leaving a big hole where my tissue had to grow to fill it (my surgeon told me it would take 6 weeks to heal and couldn’t understand why it took 6 months instead). I had many ear infections as a child (pink amoxicillin is yummy), and since age 20 get several sinus, ear or throat infections each year, requiring antibiotics.

Starting in middle school, I would get horrible acid reflux that would keep me up all night (in the days before all the drugs for it, so I really can’t stand Tums anymore). It went away for awhile, and then I started getting bad abdominal pain Sophomore year of college, like cramps unrelated to periods, and skipped a lot of classes because of pain and fatigue. At that point, I thought I either had mono or was severely depressed, because I was just so tired and wanted to sleep all the time. The pain went away after 6 months, but then I developed severe stabbing pain (age 24) in first my lower and then middle and upper abdomen, first diagnosed as IBS and finally after 3 years as a collapsed gallbladder. By the time it was removed, I had recurrent mono, a sinus/throat infection that required 3 rounds of antibiotics, was very fatigued and could barely walk. I still have some abdominal pain, maybe from post-gallbladder surgery syndrome or acid reflux.

I have always gotten stiff, sore muscles, which I attributed to the sports, but now I get even more stiff muscles. I also started getting joint pain in the last few years, it continues to get worse. Even in third grade the teacher noticed my extremely tense shoulders. In the last several years I have also started to become impatient, irritable, moody, and have anxiety and a quick temper (I was extremely even-tempered and calm until after college). I am also getting fuzzier mentally, with a bad memory, lack of concentration, and easily distracted, and often I just feel like I am loosing my ability to think and becoming stupid. Sorry to be so long, there are many more symptoms but you get the idea.

 

From the message boards.

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Sarah, Cyclical Cushing’s Disease

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Hi! I’m Sarah, I’m 15 and I’m from Brazil.

Last year my parents started to suspect that I had Cushing’s and now I’m very close to a final diagnosis. I’ve been feeling incredibly lonely and depressed so I created this account cause I though that if there was any place I would feel understood and not alone it’s here!

I don’t really know how this works but I’m very happy and thankful that this website exists!

Thank you so much for reading my bio! It’s very nice to meet you! I’m sorry you have to be here too but I’m sure we’re all gonna get through this somehow 🙂

Sarah shared more of her story on the message boards at https://cushings.invisionzone.com/topic/55512-introducing-myself/

NOTE:  Sarah included her email address.  For privacy sake, I am not including it here but if you want it, please comment on this post so that I can share it with you.

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Sara M, Undiagnosed Bio

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I’m confused and still looking for answers.

I’m a 47 year old female. Let me give you a little health history of me. Sorry it’s kinda long.

I had VSD, ventricular septum repair,  at age 2.5 . Was in/out the hospital up to this for congestive heart failure.  As a child I caught every round of the flu and strep throat every year. Was always on antibiotics for strep. The doctor we had then always talked about taking my tonsils but it never happened.  I

had chicken pox 2 times, once was very minor at a young age the second was as a teen so bad I had them down my throat with hallucinations high fever. I had measles once. Constantly had croup. As an infant I was allergic to dairy. My mom raised me on goat milk. I guess I grew out of it, I drink milk eat cheese ect with no problems now that I know of.

As a teen I was diagnosed with hypoglycemia. Was told to watch my diet and if needed, have a shaking fit, to eat a Hershey’s bar and drink a glass of OJ. If not I would end up going full diabetic. These periods of low blood sugar,  shaking fits happen off and on still. Never been rechecked into.

My biological father died from renal carcinoma in his early 40’s my early 20’s. Then I had emergency diverticulitis surgery. I spent a week in the hospital due to them not taking care of my hypoglycemia.  I had a “fit” and they accused me of being a drug addict.

Being diagnosed as having fibromyalgia helped me with medical bills and testing. They couldn’t explain my pains and issues so they doctor decided on fibromyalgia to get me a diagnosis.  Also I had a bout of what the ER doctor decided was 5ths disease. I was in my late 20’s. All my joints swelled up and bruised visibly with green and brown bruises. I had large welted and small bumpy rash all over my body along with a 100° temp. I spent a week in the hospital being tested for everything under the sun; lyme disease,  all STDs, and more.

Later on in my life I had carpal tunnel syndrome surgery on both wrists along with trigger finger surgery on my left thumb. Also a ganglion cyst removed from my foot. Lasik surgery on both of my eyes. My vision still isn’t per perfect. Seems to be getting worse. Also I have had chronic kidney stones since my early 20’s.  Lately they are not causing me too many problems.

I have been hospitalized 3 times for them. Mostly I just try to wash them out fast with fluids. I have recently begun a process to identify my stomach issues. They think I have IBD but not sure as this whole pandemic put everything on hold. Also I’m waiting to be rechecked for my heart. I have had a heart murmur all my life. My mom was told that it appeared to be a stitch that didnt take in my surgery.

Since medical has gotten better it was recently discovered that I have had a hole in the upper chambers too that wasn’t fixed. My current heart doctor was going to fix it but my blood pressure was too high for no real reason. I’m on 3 different pills for my blood pressure with no really definable effects.  It has come down a bit but still high. So we are keeping an eye on my heart with echos. Still waiting to get back into all this, waiting on this pandemic to settle down or..

Looking at the drawing with all the symptoms it looks like me, a big over weight belly and I feel like a hump back.  My weight is just going up and up. I feel like I’m carrying a 50 lb weight all the time. Making it hard to breath too.  Few years back I fell and dislocated my elbow into a T and jarring my shoulder and wrist. Now I have shoulder issues with deterioration of the socket and muscles.

Yes some of my issues are self inflicted, hazards of life.  The rest is just me. My mother and niece both have empty pituitary cells. My sister has Arnold Chiari  Malformation and has surgery for it. My brother was born with a cleph palette,  no hair lip. He had surgery to repair it by adding the roof of his mouth. He had expanding braces as a child but no issues as an adult. My sisters twins, girls,  are both autistic on the spectrum, one more so then the other. Also one of my brother’s sons is autistic on the spectrum. My grand parents,  on both sides, all had medical issues too.

My main question is does this even come close to sounding like any reasons to be checked for Cushing’s syndrome..?

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Patricia’s Daughter, Undiagnosed Bio

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My daughter (15) since Jan 2018 all signs from cushing!!

But Doctors still not sure !!

My child , my daughter (15) has pain allover , she needs help!!

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Lili, Undiagnosed Bio

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58 yrs old
have every symptom

blood work 9.86
midnight saliva 0.27
urine not back yet

history: total thyroidectomy 10 yrs ago
cancer free of thyroid for 10 yrs

 

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Cynthia M, Undiagnosed Bio

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I am currently being tested for CD because after exhaustive research on AVN (Avascular Necrosis) related to other diseases. I have four known areas of AVN & after seeing the symptoms of CD, I realized may have this.

I also have numerous other diseases Lupus, Sjgrens, Hypothyroid, High BP, Arthritis, Fibromyalgia…

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Tim D (TimD), Undiagnosed Bio

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I’m going to tested and pretty sure i have it.

I don’t know what to put here except I was am glad I finally getting tested since reading stuff on the net I see I have a lot of the side effects and it sorta clears things up some,

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Caryl, Undiagnosed Bio

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Hello!

I’m 24 years old and I think I’m starting to have the initial symptoms of Cushing’s, albeit not that florid.

It starting last year in late 2017 when I am 100% certain that my face is getting bigger, and that I found it harder to lose weight despite adequate exercise and caloric limitation.

Fat started to accumulate generally. I also experienced bowel problems for which doctors diagnosed as constipation.

I have normal blood pressure and normal 75g OGTT results.

The other thing that has come up last month is a bruise about 2cm initially and is now 4cm in diameter and simply does. Not. Heal. 🙁

My OB-GYN told me I have PCOS, and would like to start me on birth control pills.

I just want to know if it’s still possible that I’m in the early stages of Cushing’s. 🙁
Thank you

My symptoms:

– Acne (non-resolving)
– Bowel problems/ constipation
– Non-healing wound
– Occasional palpitations

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Cerce H, Undiagnosed Bio

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Well I’m really sick now. I have had every diagnosis Known to man. To many Doctors.

26 years since my first symptom of excruciating unrelenting back, and neck jaw, and temple pain.

I am now seeing that these bizarre symptoms have started speeding up.

I have been off work since beginning of September. My Doctor still thinks it is my Hashimoto’s but she is testing me with the saliva tests and 24hr urin.

I am having trouble breathing. Im completly unable to do anything but go to the bathroom and one choir at a time. And tonight I feel like I have bone pain. Not to mention the heart palpatations and high then low blood pressure.

It’s so sad to be here. But I think it is were I belong.

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Roxanna (Dawn), Undiagnosed Bio

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I’m writing because im frustrated and sad. Today I got my results and doctor says negative for Cushings .
CORTISOL, FREE 24 HOUR.
F CORTISOL, FREE, URINE 36.2 Range 4.0 to 50.0

I have another appointment with an assistant to an Endocronologist but that’s not until next month March. I’m tiered of waiting.

I’m fatigued all the time. Insomnia. Emotional and currently tapering off venlafaxine. Lots of hair for a female. Camel hump.

Large abdomen. Low thyroid and high testosterone. Purple stretch marks. Edema in ankles and legs. Extreme joint paint and vitamin D deficiency. My teeth are decaying. I gained 50-60 pounds in 1.5years. Memory issues. Prediabetic and some hypoglycemia. Blurry vision sometimes.

I was hoping finally I would get treatment. I want to get an answer and help. I want to live again. I want to one day have anther child. I just know that I cannot plan on moving forward with life without taking care of this. I feel like I’m just in a hole.

I’m 31 years old.

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