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Julie M (Jules), Undiagnosed Bio

September 28, 2015

MaryO Undiagnosed , , , , , , , , , , , , , , , , , , , , , , Leave a comment

undiagnosed4
I am here because I believe my 26 year old daughter has cushings.

She went through puberty late, just as it started she had a strange episode where she couldn’t speak, walk and was confused. I took her to the ER, the ran different tests and sent us joke with b vitamins? Since that time (11 years ago) her behaviour has been bazaar, she had put on about 6 stone.

After the birth of her child 3 years ago she had gone a lot worse. Aggressive, numbness in both legs, depression, tingling in fingers, ties and around mouth, exhaustion, insomnia and the buffallo hump which she has had for years. I thought at first she had pernicious anemia but her b12 level is ok.

The haematologist is asking out gp to run tests he mentioned cortisol, I looked it up and couldn’t believe she has exactly the same symptoms, she has constant headaches and her legs are also covered in bruises because when she does eventually go to sleep she wakes up in another part of the house due to sleep walking.

She has just been given anti depressants and sleeping tablets which she does not take. I requested her medical records and went through them found out that she had lesions in her frontal lobe 11 years ago when they ran the tests. I also discovered that she had normal low TSH and very low t4 which points to the pituitary gland

Some days she feels ‘ok’ which is very rare. Most of the time she is suicidal and stressed. I’m waiting for her to be called for her cortisol tests, I just hope they are done at a time that she is going through her cycle.

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Dee (Dee), Pituitary Bio

May 4, 2013

MaryO Addison's Disease, Adrenal Insufficiency, Menopause, Pituitary, Von Willebrand , , , , , , , , , , , , , , , , , , , , , , , , , , , , 1 Comment

My menstrual cycle ended when I was 38 years.  After a hormone panel, my doctor told me I was in menopause.

At this time, the whites of my eyes started hemorrhaging and my skin became paper thin, bleeding and bruising.  I was tested for Von Willebrands which came back negative.

A few years passed and my blood pressure sky rocketed, my hair started falling out, my teeth were breaking and I was gaining weight and unable to stop it.  I grew a heavy beard, black hairs on my arms and thighs.  My face became distored, my head was pushed towards my feet from a hump on my back.  I was losing the use of my legs, and unable to hold a pen or pencil.  I started to look 7 months pregnant with a larged mid-section.  I couldn’t retain simple instructions, and had to stop driving.

I saw numerous doctors, and each worked with the symptoms as the came, but no one put everything together.  My feet and fingers were numb, and I was losing the ability to think correctly.  I had severe depression and anger issues.

I saw an article in Reader’s Digest about a mysterious illness and took it to my current doctor.  She really didn’t think I had Cushing’s because it was so rare, but my 24 hour urine test came back postive.  Next I was sent for the MRI which showed the tumor on my pituitary.  I had surgery June 27,2007.

It took 18 grueling months to wean off the Prednisone.  I had chronic nausea and diahrrea during this time.  My Endocrinologist did not study up on Cushings and removed my Prednisone 1 week after my surgery.  I crashed and was taken to the ER in serious condtion.  He did it to me again a few weeks later, with the same results.  After the second time, he left my Prednisone alone for the next 18 months.

October 27, 2011 I had Paraespohcial surgery where my stomach had been pushed into my lungs.  It was a very diffcult surgery and recovery.  I am now batteling Celiac, which after reading up on Addisons, I am wondering if I have Addisons?  I had Addison’s crisis twice when my predisone was removed to quickly after my brain surgery.

Even though I am cured of Cushings, it seems the side effect continue to make their debutes.  I am grateful for where I am today, even though I don’t know what is around the corner.   I guess what’s around the corner will be dealt with when I get there, but for today, I am thankful.

Alexis (Alexis), Undiagnosed Bio

April 30, 2013

MaryO Undiagnosed , , , , , , , , , , , , , 1 Comment

I’m 32 year old female from Virgina Beach. I started to write this really long story here but then decided I will wait and see if my test comes back positive for cushing’s. I will say that I have been dealing with the craziest symptoms over the past 6 months. Look back I think my health issues are related to this disease. I have always dealt with kidney stones and allergies.

My current symptoms include

-Buffalo Hump

-Horrible pain in back, arm and legs

-Kidney Stones

-Mood Swings

-Gained 25 lbs

-Fogginess, can’t complete sentences

-Moon Face

-Swelling in neck. Neck went from 15.25 in to 18 in.

-High Mono count on blood test and low Vitamin D

-Lethargic

-Crazy sensations, numbness, burning, aching

-Really high resting heart beat

My Primary Care Doctor, Pain Management Doctor and ER doctor’s had no clue. Most look at you crazy or they know something is wrong but had no idea what. They really didn’t do any detailed testing until 2 months after all the symptoms.  I was so frustrated. They got me into a Neurologist which I see this week. Luckily, I switched primary care doctor’s and after one visit  with my new doctor she decided to test me for Cushing’s. I’m a very detailed person and really started to pay attention to my symptoms. I started to keep a journal and took photographs as my body was changing.  I think my new doctor had an advantage.   I’m grateful I met her and that she took time to look at my history and is willing to think outside the box.

Mind you I am an athlete, I love the outdoors, wakeboarding and being active is important to me. Since March I have completely changed. I’m lucky to make it to work. I always look forward getting away from work and going home to sleep. The pain is unbearable in my legs and back.  I refuse to take medicine until I get a diagnosis. I don’t want any meds to mask the symptoms.

I work in a recreation center where my heart belongs and it makes me sad to see how my body has changed but I’m grateful for my new doctor and hopefully will get back to normal soon.

Whether I have Cushing’s or not I’m glad I came across this site to see such a wonderful support group.

Sincerely,

Alexis

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