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Lor, Pituitary Bio

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golden-oldie

From Tuesday, June 9, 2009

9-07

COLON SURGERY: 1’ colon removed (pre-cancerous pulup/tumor removed.)
10-07

HEAD/NECK/SHOULDER/THROAT PAINS: hundreds of daily: “pops” in neck, terrible stabbing pains in base of skull, throat, shoulder, with hundreds of random screams of “ouchhh” daily for months. Tests or Treatments tried: chiropractors, ibuprofen, hot packs, x-ray on neck normal, physical therapy, MRI on neck normal
1-08

BODY JOLTS & INVOLUNTARY MOVEMENTS START: electric jolt sensations and myoclonic type jerks and involuntary movements – mostly when relaxed. Movements will stop if I get up and move around. These come with or without loud screams, gasps or other vocal noises. Tests or Treatments tried: EMG normal, MRI of head and normal, pain meds no help, oral steroid by Physiatrist no help,
1-08

SLEEPING PROBLEMS: wake up every night and sometimes stay awake for many hours – happened entire 2008, but 2009 was better.
2-08

MOUTH/JAW/TONGUE START: randomly the tongue tingles or twtiches, the jaw & cheek have pain (like someone is pulling off my face), the mouth/throat/tongue/and/or gums get ice cold, the mouth waters for hours. Tests or Treatments tried: more blood work normal, except a 7x higher than normal inflammation which neuros said had to be a lab error. Got steroid shot in head where the stabbing pain is. EEG recommended due to small seizure like movement when injecting the steroid.
4-08

MUSCLE TWITCHES START: randomly, different muscles twitch, hundreds of times daily (it is like body is making popcorn). Tests or Treatments tried: took a coupld stress free vacations. (I now its not stress related anyway but since the doctors cannot diagnois me, they don’t know what else to think. No help – same symptoms. Seen Neurologists with no answers. Got another steroid shot in head.
8-08

KNEE POPPING STARTS: just like neck from 10-07, one day it started to “pop” with pain hundreds of times daily. This made it hard to walk for months. Tests or Treatments tried: knee x-ray-normal and a special Lymes Blot test in California = negative.
11-08

Another Neurologist: Repeated inflammation test=normal.
12-08

Rheumatologist ran more blood test=normal
OTHER SYMPTOMS IN 2008-2009:

INVOLUNTARY MOVEMENTS / TWTICHED CONTINUE

ALL MOUTH SYMPTOMS CONTINUE

GASPING FOR AIR (take in a huge gasp of air, happens randomly, a several times daily)

LEG WEAKNESS / PAIN

INSIDE ELBOW AND MIDDLE FINGER, LOWER BACK AND BIG TOE PAIN

FATIGUE

HIGH PULSE 130+ doing nothing

HIGH BLOOD PRESSURE 145/97 average

HEART HURTS (just occasionally)

EAR ACHES/RINGS (CT of sinus area was normal)

NIGHT SWEATS (occasionally / only on head/neck area)

NECK HUMP

SKIN (acne, ichy, sweaty)
1-09

Tests or Treatments tried: Tried depression pills for 2 months with no help. I do not believe I have depression/anxiety issues though.
3-09

Tests or Treatments tried: Went on another fun trip to Disney World – had very strong symptoms most days
3-09

WEIGHT GAIN: (necklace didn’t even fit because my neck / stomach is getting fat).

Cortisol level checked and was high, so Endo specialist was recommended).
5-09

DIAGNOSED WITH CUSHING’S

4x6mm tumor on pituitary and high cortisol level. Scheduled for consult/surgery at Mayo in July.
7-09

UNDIAGNOISED and called Borderline Cushing because symptoms not are typical of Cushings.

They reviewed MRI – says its either a tumor or a rathke’s cleft cyst

CHEST XRAY – normal

EKG – normal

EMG – normal

ENT Dr. – normal exam – cannot explain mouth symptoms

COLONOSCOPY

MAMMOGRAM

DERMOTOLOGY – skin cancer diagnosed, shaved and treated

MRI on neck & spine- normal

EEG – normal

CERVICAL SPINE MRI – normal

MOVEMENT LAB: my movements don’t fall into the myroclonis catagory because I move faster than 100 milliseconds (?), even though they are a split second movement

SENSORY PROVOKED POTENTIAL NEUROLOGY LAB – normal

DEX SUPPRESSION & CRH & CORTISOL TEST, did not suppress, and had high and normal cortisol

OTHER URINE AND BLOOD TEST

PARANEOPLASTIC PANEL blood work – results show striated muscle antibodies which is either a neuro, myasthenia gravis, or a hidden tumor so get a lung scan recommended
9-09

LUNG/ADRENA CT SCAN: did not show lung tumor but showed enlarged or nodules on both adrenal glands
10-09

blood test & urine- (did 24 hr urinary metanephrines and fractionated catecholamines and blood aldosterone concentration and renin activity – all normal) (cortisol at highest end of normal)
11-09

new MRI – same as before
12-09

new CT of adrenals – no change. Await new results of striated muscle antibody test.

Dr recommends I wait 6 months to see what changes.
6-10

bi-lateral neuro angiogram confirms Pit. Cushings
Pituitary Surgery May 12, 2010
Back to work after 2 weeks. Its been 1 month since surgery and muscle pain and weekness is gone, heart pounding gone, high blood pressure down, but still have unusual symptoms such as involuntary movements and mouth symptoms. Still have enlarged adrenals.

 

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Cushing’s Awareness Challenge 2015

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Not a bio but folks who write bios might like to participate!

 

awareness

 

The Cushing’s Awareness Challenge is almost upon us again!

Do you blog? Want to get started?

Since April 8 is Cushing’s Awareness Day, several people got their heads together to create the Fourth Annual Cushing’s Awareness Blogging Challenge.

All you have to do is blog about something Cushing’s related for the 30 days of April.

There will also be a logo for your blog to show show you’ve participated.

Please let me know the URL to your blog in the comments area of this post or an email  and I will list it on CushieBloggers ( http://cushie-blogger.blogspot.com/)

The more people who participate, the more the word will get out about Cushing’s.

Suggested topics – or add your own!

  • In what ways have Cushing’s made you a better person?
  • What have you learned about the medical community since you have become sick?
  • If you had one chance to speak to an endocrinologist association meeting, what would you tell them about Cushing’s patients?
  • What would you tell the friends and family of another Cushing’s patient in order to garner more emotional support for your friend? challenge with Cushing’s? How have you overcome challenges? Stuff like that.
  • I have Cushing’s Disease….(personal synopsis)
  • How I found out I have Cushing’s
  • What is Cushing’s Disease/Syndrome? (Personal variation, i.e. adrenal or pituitary or ectopic, etc.)
  • My challenges with Cushing’s
  • Overcoming challenges with Cushing’s (could include any challenges)
  • If I could speak to an endocrinologist organization, I would tell them….
  • What would I tell others trying to be diagnosed?
  • What would I tell families of those who are sick with Cushing’s?
  • Treatments I’ve gone through to try to be cured/treatments I may have to go through to be cured.
  • What will happen if I’m not cured?
  • I write about my health because…
  • 10 Things I Couldn’t Live Without.
  • My Dream Day.
  • What I learned the hard way
  • Miracle Cure. (Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer)
  • Health Madlib Poem. Go to : http://languageisavirus.com/cgi-bin/madlibs.pl#.VPGZQlPF9A8 and fill in the parts of speech and the site will generate a poem for you.
  • The Things We Forget. Visit http://thingsweforget.blogspot.com/ and make your own version of a short memo reminder. Where would you post it?
  • Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!
  • 5 Challenges & 5 Small Victories.
  • The First Time I…
  • Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make it branch more.
  • How much money have you spent on Cushing’s, or, How did Cushing’s impact your life financially?
  • Why do you think Cushing’s may not be as rare as doctors believe?
  • What is your theory about what causes Cushing’s?
  • How has Cushing’s altered the trajectory of your life? What would you have done? Who would you have been
  • What three things has Cushing’s stolen from you? What do you miss the most? What can you do in your Cushing’s life to still achieve any of those goals?
  • What new goals did Cushing’s bring to you?
  • How do you cope?
  • What do you do to improve your quality of life as you fight Cushing’s?
  • How Cushing’s affects children and their families
  • Your thoughts…?

Sheara (sbailey), Pituitary Bio

1 Comment

golden-oldie

 

I started back in Jan 08 with a heart arrythmia that ultimately put me through weeks of cardio testing. All cardio came up negative, including passing the stress test at 110% for my age. I went back to my PCP and she was deadended with answers.

I started to advocate for myself asking if it could be endocrine since I had been diagnosed with Hashimoto’s Disease(a type of Hypothroidism) in 2002. In particular I asked her if she thought my adrenal system was the culprit. My doc said well let’s check cortisol levels. I did a salivary cortisol test that, according to the endocrinologist my doc spoke with said, was the highest he had seen.

They ordered up an MRI and confirmed a Pituitary Tumor on June 27th. My doc reacted quickly and had me go for an emergency eye exam that day to check visual fields…they were fine. Then my doc had me do urine and dexamethasone testing to see if cortisol levels could be duplicated.

Early July I had a phone call from my doc stating that since the other tests for cortisol came back normal they felt I had a non-functioning tumor but still wanted me to meet with a neurosurgeon. Finally on Aug 5th I met with the surgeon.

In the meantime I had been reading whatever I could get my hands on. I was prepared with many questions to the surgeon. Before I was in the room talking with him for 15 min. he mentioned Cyclic Cushing’s as a possibility. He had me repeat the salivary testing for 5 days…all came back normal. So the opinion remained that I may have Cyclic Cushings or can watch the tumor and symtoms or I could have the tumor removed for peace of mind.

I opted to have the surgery. to remove the tumor. Last Mon. Sept 29th I had Transsphenoidal surgery to remove the tumor. On Fri. Oct 3rd the neurosurgeon called with the pathology report results being that it was an ACTH(aka Cortisol) and Prolactin Tumor. He was vague to make a formal statement to agree that it was Cyclic Cushings.

So I am home on the mend 1 week post op…glad I made the decision to go forward with tumor removal. The medical system is curious though how they appeared almost afraid to make any formal opinions. Although the surgeon did state that Cyclic Cushings is difficult to diagnose. In my opinion, the evidence is in the pathology report!

Maybe it is my imagination, but I already feel like my “old self” back 10 yrs. ago. The other bit of history for me is that after my hypothroidism was diagnosed and I was stabilized on Synthroid and Cytomel I could never get weight off and in less than 6 months in 2005 I gained 40+lbs. No matter what I tried to do for weight loss I could not budge more than 5 lbs. I am now anxiouis to see how I do. I meet with the neurosurgeon in 5 weeks. He and possibly an endocrinologist will be following my health. Time will tell but I do feel I am on the right track.

Thanks for listening!

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Elaine, Undiagnosed Bio

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golden-oldie

 

 

 

Hi my story is so much like all the others that I have been reading on this site.

For the last several years I have been feeling bad, I am tired all the time. I have gained 50 pounds. I have always had a low body temperature and feel the cold more than most people;however in the last 3 years or so I can’t take extreme heat either. I am always either too hot or too cold. Sometimes I sleep for 12 hours and other times I do not sleep at all.

This year I have had people tell me that my personality has changed I am much more aggressive than before. I also look bloated around the face and belly. People keep asking me am I pregnant because my stomach is huge!

In the last 12 months my hair started to fall out. I got an peptic ulcer, been diagnosed with slow digestion, sleep apnea and arthritis of the spine. I used to be able to walk 4 miles in 40 minutes but now I can barely walk a mile. My short term memory is bad and getting worse all the time. I find it really hard to focus. I have had 2 upper respitory infections in the last 10 months which is unusal for me. Also I have dermatitis on my back which just started 4 years ago.

I thought maybe I had a thryoid issue so I went to my GP who sent me for bloodwork. She tested my TSH, T3, T4, ACTH and Cortisol. My TSH’s came back normal (2.7) but my ACTH and Cortisol is high. I don’t have diabetes or high blood pressure although my stress level is through the roof most of the time. Anyway my doctor thought that the ACTH and Cortisol was too high and she asked me if I was getting more headaches. I have always suffered from migraines but in the last couple of years the headaches have gotten worse. She thinks I may have Cushings disease.

My doctor was so concerned that she is sending me for an MRI and I got to a referall to an endo who I will see in two weeks. I will post an update as soon as I know something.

 

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Christine (Christine), Undiagnosed Bio

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golden-oldie

 

 

Hi my name is Christine. I am 52 yrs old and under going the first stages of the diagnosis of Cushings Syndrome

My diagnosis started back in Septmeber 2008 but unfortunatly I still don’t have a final diagnosis almost a year on.

I am at my wits end with frustration and feeling really poorly right now and know were to ask questions.

I have just returned home from a 5day stay in hospital for a midnight cortisone test. I left more frustrated than ever as the tests all went so very wrong and I may have to return and start all over again.

Can you help by answering this question…..when asleep and blood is taken at midnight……do I have to be in a deep sleep state for a result. Obviously I keep waking up and my Consultant insists I must remain in deep state sleep to confirm a diagnosis.

Please can someone help.

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Teresa G (HB), Pituitary Bio

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pituitary-location

 

I am a 47 year old woman diagnosed with Cushings Disease June 2014. I have always been one of those girls who was curvy, but was a yo-yo in the weight department.

About 1o years ago I was diagnosed with PCOS. I had extra facial hair, extra weight, irregular periods, infertility problems. Boy did I feel good about knowing what was wrong with me!

Then a couple of years after that I had a stress fracture in my right foot. I seemed to take forever to heal, but finally did. I had several uneventful years. I did have pain in my pelvic area for quite sometime before deciding something had to be done. Four years ago, after visiting my gyno, it was decided that I should have a hysterectomy due to fibroids. That is when the fun really started for me.

I really didn’t noticed, but sometime after that my skin became really oily, I had acne (for the first time in my life), and the weight had come on. My hair became quite wavy. And the stress factures started.

First my left foot, the 2nd metatarsal, then the 3rd metatarsal. All in all I have had four different instances of stress fractures in my feet, and one on my ankle. What got everyone’s attention though, was when my hip broke.

I had been seeing a chiropractor for back problems I figured were due to wearing a boot for my fractures on and off for years. My back did not seem to be getting any better. As a matter of fact my hip area seemed to hurt worse. Then, early the morning of January 8, 2014, I was trying to make my way to the bathroom, when I heard this awful noise, felt an even worse pain and down I went. Later the doctors figured I had had a stress fracture that had started to heal in the femoral neck of my hip, but broke.

All of my doctors were scratching their heads. But that was about all. My PCP ran some blood and urine tests, but really did not find anything out. I FINALLY asked every one of my doctors, since they did not know what was wrong, where did they suggest I turn. Each one said and endocrinologist. Of course my next question was “What is an endocrinologist?”.

That was in February 2014. I was referred to Dr. Ferries, one of the few endos in Wyoming. It took a while to hear from her, but when I did, I was disappointed to hear that the soonest I could get in to see her was in June.

In the meantime, I had refractured my ankle. April 1, 2014 I had the ankle repaired. April 7, 2014 I passed my first kidney stone. I let Dr. Ferris know about it. Shortly after that my appointment got moved to May.

My appointment with Dr. Ferries last about 2 hours. After asking all the questions, listening to my story and an exam, she told us she thought it may be Cushings, but needed to do several tests. She let us know that it was something that would take some time.

I did the urine tests, the blood tests, and an MRI. My cortisol levels were way out of the norm. The MRI showed a 6mm microadenoma on my pituitary. I was ecstatic! After deciding to have my little friend removed in Denver, Co, Dr. Ferries sent my referral to Dr. Lillehei at University Colorado Hospital.

I took a few days, but they called to make an appointment. July 31, 2014 was my appointment with the brain surgeon. I was so happy to be on my way to feeling better! I had to tell my story again to Dr. Lillehei, the brain surgeon. He did not see the tumor, so he wanted me to see his endocrinologist. Then I had to tell my story yet again to Dr. Wierman. She told me she was not impressed by my previous tests and MRI. She would like me to do them all again. She told us they had their protocols, and when they did not follow them, they usually got bit. I was disappointed, but understood.

Those results of those tests were inconclusive. My cortisol was not nearly as high. So the next step was IPSS. The petrosal was scheduled for August 18, 2014. The results of the that test were quite definitive. There was an ACTH secreting tumor on the right side of my pituitary. Hooray!! My surgery was scheduled for September 5, 2014.

The surgery went off without a hitch. Colin, Dr. Lillehei’s PA, then informed me that the surgery was the easiest part. He said I would pretty much feel like sh@%. He was right. I am feeling better and better. My skin is not a grease pit any more. I am loosing weight. My appetite sucks and sweets make me even more nauseated. I can manage to make it to aquacise several times a week, though. I am looking forward to the days when I have energy!

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Survivor’s parents organize charity bike ride for Children’s Hospital neurosurgery

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La Cañada resident Taylor Winter was just 12 when she was diagnosed with Cushing’s disease, a condition caused by a tumor on the pituitary gland that affects everything from organ function and sleep to hormone levels and body growth.

Although she’d likely lived with the ailment for years, once it was discovered by an endocrinologist, Taylor’s family had to act fast to remove the tumor. That’s when they were referred to Children’s Hospital of Los Angeles’ neurosurgery division, according to mom Gaia Winter.

“We met with neurosurgeons to see what her options were, and eight days later she was in surgery,” Winter said, recalling the two surgeries it took to remove Taylor’s tumor.

Today, Taylor is an 18-year-old freshman studying theater arts at North Carolina’s High Point University. Her life may not be perfect (she still endures complications from her condition and surgeries) but she knows it’s better than it would have been had the tumor gone unchecked.

“I was not in a happy place before I got treatment, and I think it would still be that way today if I had gone undiagnosed,” she said in an email interview.

This Saturday at 11:30 a.m., Gaia and husband Wade Winter are hosting a charity bike ride at the indoor cycling studio SoulCycle in Pasadena to raise money for Children’s Hospital’s Neurosurgery Ambassadors group. The group comprises former brain surgery patients and their families who wish to “pay it forward” by raising funds for the neurosurgery division.

For a $75 donation, participants can reserve a bike and take a 45-minute stationary bike group ride, although cycling is not mandatory, Gaia Winter said. The money raised will help sponsor neurosurgery fellow Dr. Judith Wong, who will take her training to a town where skilled neurosurgeons are few.

Michael Sampiano, director of the hospital’s Ambassador groups, worked with the Winters and another family to create the program in 2012. So far, the neurosurgery division has received $14,000 from the efforts of that group. Both Taylor and twin sister Alissa are junior ambassadors in the program.

“The money this group raises covers the training and living expenses of our pediatric neurosurgery fellow (and) it gives our neurosurgery division the financial backing to continue its work,” Sampiano said, encouraging locals to join in Saturday’s ride. “It is indeed an investment in the community and for kids in the future who might be in need of this life-saving work.”

Taylor says she was lucky to have such a skilled facility so close to home and recalls her time spent at Children’s Hospital positively.

“Even though I was in pain or discomfort for the majority of my stays, the hospital staff and various volunteer groups… helped create such a fun and caring environment that I didn’t want to leave,” Taylor said.

The Winters, along with other patient families, hope to raise $100,000 this year for the neurosurgery division through the Ambassadors group. It’s the least they can do to give back, after being given so much, Gaia Winter says.

“They gave her the ability to be a normal kid,” she said. “We just feel passionate about giving back to them. The amount of work they do and the lives they touch is tremendous.”

 

What: Charity Ride for the Division of Neurosurgery

Where: SoulCycle, 140 S. Lake Ave., Pasadena.

When: Saturday, from 11:30 a.m. to 12: 30 p.m.

Admission: A bike reservation cost $75 but all donations will be accepted.

More info: Visit http://support.chla.org/pages/thewinterfamily or email NeuroAmb@gmail.com

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