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We have a new form to add your own bio!

Try it out below…

 

 

Thank you for submitting your bio – sometimes it takes a day or so to get them formatted for the website and listed on the pages where new bios are listed.

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Please do not ask people to email you answers to your questions. Your question is probably of interest to other Cushing’s patients and has already been asked and answered on the Message Boards.

Occasionally, people may comment on your bio. To read your bio and any comments, please look here for the date you submitted yours and click on the link.

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Roberta “Bert” P, Undiagnosed Bio

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Hello Everyone,

Like all of you I am in pain, gaining weight, have moon face, etc. I have had Fibromyalgia for over 4 years and am lucky to have a very good doctor for that who is a specialist in his field-Dr. Pelegrino.

However for the last year or so I have had pain that is more than the tender points and general fatigue you get from Fibro. We started giving me cortisone shots every 5 weeks or so for the “bad” areas, but the “bad” areas are worse now and have enveloped my muscles to where I don’t know what to do. My fingers are aching just typing this. Does anyone else experience this? Do you use the thing that you can talk in and it types? I have so many questions but will have to ask more later.

My main question is about this horrible tightness and pain to turn my head-is this a symptom? I have had it for more than 2 weeks it is from the base of my skull to my shoulder blades. Any suggestions to help ease this would be welcome. I take Vicodin now but it is not affecting it and can’t take steroids because I am having the test next Monday to see how high the cortisol is. I had a saliva test and it was pretty high on that so now they are trying this.

I also have elevated blood sugar, lowered thyroid, higher blood pressure and the purple stretch marks on my stomach. My face has officially become “moon” so is this pain from the “hump” forming that I have read about? See how scatterbrained I am-my memory is totally gone-if you tell me something and I have not written it down it is forgotten, which is bad especially for my job.

Thank you in advance for your support and helpful advice.

Bert

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Elaine, Adrenal and Pituitary Bio

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I have a tumot in both the pitutiary gland as well as the adrenal gland and doctors dont know which is secreting very high levels of of cortisol.

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Barbara S (Babs1953), Adrenal Bio

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Was finally diagnosed in Feb of this year.

Had surgery mid March to take left adrenal.

Am still on 3mg prednisone daily. Lots of joint muscle aches, headaches, hair falling out, dry skin, split nails… sleeping a bit better but tired during day,can’t walk long or stand without feeling like I’ll hit the ground any minute.

Any weight lost right after surgery is back!

 

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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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Jennifer P’s Daughter, Undiagnosed Bio

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Mom to a beautiful 13 year old girl who has struggled with her weight for years.

After slowed growth doctor diagnosed her as growth hormone deficient and she has done injections for almost a year. She has grown some but still has truncal obesity and other symptoms that point to Cushing’s.

Her endo blows me off bc she doesn’t have the purple stretch marks but my fut tells me we are missing something.

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EvE7070, Pituitary Bio

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Hi and good evening new here So im EvE7070 and oh my were do i start.

I was finally diagnosed with Cushing‘s 2015 To wich i had no clue what it was and how horrible it would change my life.

But lets start before when it first started I was a gym rat and eat very lil and would do fasting often and one day my menstrual cycle changed and I stop getting my periods and after that I gained about 60 pounds out of nowhere and I decided to see a doctor who told me that I had a hormone deficiency and they put me on something called glucophage which instead of making me lose weight made me gain another 30 lb within the few months of taking it and nobody knew what was wrong with me or how to treat me and I was very depressed for so long because every time I would see a doctor they would say you’re obese and you need to get on a diet and I would cry and tell them I don’t eat I exercise everyday and I don’t understand what is happening to my body i all of a sudden had every disease you could think of and know doctor could tell me what was wrong

i even got a allergies to peanuts which I had never had a problem with before crazy right

So finally after so many yrs i stated getting headaches to witch they said migraines and then my eyesight started to get affected and finally they said no maybe it’s just a sinus infection to where I had to have an X-ray done of my sinuses and that’s when they saw the tumor and my pituitary gland

So had surgery 2015 was on remission until the beginning of this year I started getting headaches again and my eyesight was starting to mess up and decided to go back to the endocrinologist and now they tell me that my cushing‘s is back and I’m hoping that my MRI comes out okay and I don’t have a tumor again but I don’t know what the odds of that happening again of another tumor this is the hardest thing that I’ve had to go through and I’m having a really hard time trying to adjust again to everything that’s going on with my body they say the second time around is worse than the first time and so far it’s true emotionally my depression is at its highest

I’m having problems with coordination brain fog concentration problems forgetting what i was taking about and im really scared I won’t be able to deal with it this time It took me so long to get back to wat ever normal is and now im back here again

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Wendy I, Pituitary Bio

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Newly diagnosed (5/2019) with pit tumor, waiting for appt at U of M on 9/26.

 

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Amy G, Cyclical Cushing’s Bio

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I Would like to talk with Mary O!!

I have rare complications with my Cushings Disease.  I am having trouble finding the right doctors in Utah.  I would really appreciate guidance she might have.

I am getting very sick. And my options are becoming more and more limited.

If she has time to call, text or email me I would appreciate it very much.

Thank you.

 

Amy has been contacted.  However, if you know of any helpful doctors in Utah, please comment on this post.  Thanks!

 

 

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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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Lisa S, Pituitary Bio

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I was mid-diagnosed for about 5 years. Doctors that I had gone to for decades would prescribe me diet pills, told “brisk walking” (even though I walked about 12,000 steps every day at work), I was told to “put down the fork “… finally I was to meet a new doctor- the very first time I met her- she figured it out!

Then came blood tests and mri.

My neurosurgeon appointment was set for Nov. then I got a call that it would be October…. It was the end of September. Yay!! I was so happy someone figured it out!

First surgery didn’t get it all so it was done again. Veins were failing but I finally got to go home. 5 days later I was readmitted for my sodium levels being too low…. I told them my nose kept running- surgery #3- cerebral membrane leak- iv in my foot and a port installed…. and the spinal tap.

Again I got to go home. Was out of work for 11 mos. I was sooo tired. Went from 264 at original surgery to 109. That was in 15.

In the last 9 months I’ve been in the icu twice for adrenal crisis…. Nothing is getting better.

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