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Roseglass (Roseglass), Adrenal BIo

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adrenal_glands

 

I have been ill for 9 years. I was experiencing severe anxiety/depression, profuse sweating, extreme hypertension, a non-stop migraine, and living in a constant state of fight-or-flight. Seven years ago, a full body CT scan revealed a left adrenal tumour. It has taken until this past year (actually just a few months ago) to finally get a diagnosis of pheochromocytoma from the medical field (no one listens to the patient – I have been telling them about the pheo and that I have Cushings for 7 years! My cousin died from an undiagnosed pheo.) Fortunately, I have wonderful long-term family doctor and more recently a great endo who have given me alpha and beta blockers to keep the symptoms more tolerable while we waited for a confirmed diagnosis.

Besides the above symptoms from the pheo, I have all the typical Cushing’s symptoms, I have also had a stroke, at least one TIA, and a heart attack. My heart has become enlarged and I can hardly breathe. After the heart attack, my weight took a huge jump. I had already become quite large but then I gained 7″ around the middle in 4 weeks. I complained to my doctors that something was terribly wrong but they kept saying I was just eating too much (sound familiar?). I also have a variety of lesions covering a variety of organs.

Due to the diagnosis of pheochromocytoma (via a MIBG), I was sent to a surgeon. The first was an idiot (don’t stand for that – ever – there are decent people out there). Then I was allowed to choose my own team. I found a team in Toronto, at Princess Margaret Hospital, who are knowledgeable and really understand this disease. When they said I had classic Cushing’s, my eyes teared up – finally someone saw it.

I have just had my 1st consultation with them, plus more tests, and am waiting for my 2nd consultation in January when I also expect to meet with the surgeon. It is looking hopeful that I may have my life back. They believe my body will go back to normal: my heart, diabetes reversal, my hair return to normal (more on head, less on chin), pain relieved (I can hardly walk and cannot climb stairs), and other delightful changes …including a normal life span.

I am worried about small lesions developing on my pituitary and right adrenal gland but no one is really looking at those at the moment. I just got word that the left adrenal tumour doubled in size recently so getting this out is the priority. It has been such a long and frustrating process that I won’t feel truly at ease until I have an actual surgery date.

Roseglass

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Amy (Amy), Undiagnosed Bio

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undiagnosed2

 

I have been going back and forth on whether to add a bio here because I don’t yet have a diagnosis. Also, it is really difficult to believe in myself sometimes and occasionally I feel relatively good. Some members of my family don’t support or believe me, but my husband is incredibly supportive and has been with me since my symptoms first started. My sister and my dad have both said to me that they don’t think anything is wrong with me and either implied of outright said that I am just depressed. They keep pushing me to continue with school even though I am taking two classes right now and can barely keep up with them at this point. I graduated from college a few years ago in biology and really would like to go on but don’t really feel like it is possible since I was barely able to get the degree in the end due to my energy levels (mental and physical). At this point I am going to L.A. to visit Dr. F next Tuesday so I am hoping that I will be getting a diagnosis and that something good will come out of this.

I think that my symptoms started as a sophomore in high school. I noticed that I was always tired for some reason and couldn’t seem to “wake up” mentally a lot of the time. I also developed cluster migraines that were particularly hideous. This is also when I noticed that I had a buffalo hump below my neck which I assumed was caused from a fall on my head when I was seven years old. The logic here doesn’t really make sense since I only developed neck and shoulder problems and pain in high school with no symptoms beforehand. I had chiropractic care for years for a stretched ligament in my neck that could never seem to heal. At this time I was very thin (5’8” and 140lbs) so there was no reason that I should have had a fatty lump at the base of my neck. I also had stretch marks on my sides at this weight. I have since gained around 90lbs (about 120 if you count some weight lost over the years due to drastic measures) and I am now 25 years old. There are a ton of stretch marks now all over my body from my knees to my elbows.

I really don’t have an explanation for the weight gain since I have never eaten much. Over the years I kept assuming that I was going to start losing weight because I kept making changes that should have led to weight loss. When I talked to anyone about it the problem was always me and what more I could be doing relating to something they randomly read about weight loss. There was always an explanation for why it wasn’t happening and why I needed to just try harder. I have continued to exercise throughout most of my “illness” either intensively (beachbody insanity several times, running daily) or light (walking or yoga). The intense times are unsustainable for me and it is incredibly hard to get dressed or take a shower let alone do intense physical activity. Nevertheless, I try to run or walk a little every day. In my diet I have made considerable changes such as becoming a vegetarian, vegan, going on juice fasts of vegetable juice for weeks, and just severe calorie limitations. Now I just stay under 2000 calories a day. Frequently I don’t eat very much because I don’t have the energy to make anything. Some people on here talked of acquaintances not recognizing them- I have the same thing. I felt ugly on my wedding because of my weight and have noticed that people are not as kind to the heavier me.

Whenever I talked about having low energy and feeling down the answer was to go to a counselor and that I was depressed. Counseling throughout college was to no effect. I honestly don’t think that I am depressed. I feel happy much of the time, but I’m just very tired and foggy and it is incredibly easy to feel down because of this.

My symptoms and the development of new ones have gotten much worse over the years. During college I had to take a semester off and towards the end I felt like there was no way to keep up with my class load even though I pretty much studied all day long. My memory is terrible and any classes that required memorization were impossible. I developed low grade fevers that continued off and on during the day for at least three months. I sought medical treatment and was tested for HIV, lyme, lupus, hypothyroidism, etc., but the cause never became apparent and I think my doctor lost interest in trying to figure out what it was. My doctor said I probably had PCOS because my testosterone was at the high side of normal, and an infectious disease doctor said I was just depressed. I was too tired to fight for myself and I thought maybe the stress and work of school was getting to me and maybe I really was just depressed. I thought that the weight, the brain fog, the aches, and the tiredness would go away once I removed myself from a stressful situation-it didn’t and has since gotten worse.

I just had a cortisol saliva test done that I ordered from ZRT labs and it indicated high cortisol, but it wasn’t that high and was lowered in the evening. I don’t really know what this means since I thought cortisol was supposed to remain high at night if you have Cushing’s, but I guess I will see what the doctor thinks next week. I have so many of the symptoms and I don’t know what else to do if I don’t end up having Cushing’s. Some other symptoms that I have experienced or that are persistent include: eczema on my fingers, round face, fat neck, sore joints (hands, feet, ankles, hips, shoulders, back) and muscles, excessive sweating, high blood pressure readings, becoming more awake at night and having trouble falling asleep, hip, ankle and foot pain, very dry hair and loss, trouble climbing stairs and descending due to weakness, lower back pain and more neck and shoulder pain (my hump is bigger), blood pounding in ears after little activity, blotchy arms and cheeks, acne on my chin, hirstruism, feeling swollen and uncomfortable, body stiffness, spinal cyst, lightheaded, shaky and clumsy, feeling hot (maybe hot flashes), long recovery from colds and chronic sinus infections, long recovery for injuries, arms and legs fall asleep easily, menstruation date fluctuates constantly, trouble giving blood, nausea and stomach problems, anxiety, twice a bump on the side of my cornea that was inflamed and I could visually see and feel, and a few instances where I had abdominal pain so bad that I couldn’t move. As far as easy bruising goes- I never know why I have bruises but I don’t get them often. I do have some other weird things with my skin such as having “sleep” marks from very short term positions that will not go away for a long time. Also, easy breaking of skin… I once used an electric massager on my back and didn’t realize until later that it had literally mauled me. I had horrible red and circular scratches and (now) a large scarred area. Other times I have had scratches so minor that they barely broke the skin, but I still have a scar…

Being sick all the time is a very humbling experience and at times it can be way too humbling to the point where I feel worthless. I hope there is more understanding and love for people experiencing pain on a daily basis since it seems to be much more common every day. It has been really beautiful to see on this forum the support that parents are giving to their children with Cushing’s and support from doctors and other family members. I don’t know if I would have believed I could have this if not for your stories and your personal struggles to get treatment. The more I read (scientific articles and medical information and bios) the more I recognized that what I was feeling all these years was real and could possibly get better. Thank you for reading my story.

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Karen K, Undiagnosed Bio

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undiagnosed2

 

Hi, I’m Karen 51 yrs old, undiagnosed by a doctor, just realized all my crazy symptoms are related and have made an appointment with my doctor for next week.

I think it started in my Mid 30s with very bad acne, horrible migraines with throwing up, vertigo, high blood sugars, major depression, sleep apnea.

My symptoms over the last 12 years are hair loss on my scalp, weight gain no matter what I eat or how much I exercise all in my torso, buffalo hump and fat pads above clavicles, daytime exhaustion, insomnia, bloated feeling, edema in my legs and feet, tendonitis, arthritis and bone spurs, dehydration daily, sweating a lot during the day and at night, bruise easily, muscle weakness, depression, scary crazy mood swings with lots of screaming, no libido, red and white patchy tongue, high blood pressure and diabetes, my face gets red and hot like I’m blushing or have a bad sunburn, then goes back to normal looking, fat face, really bad heartburn everyday several times a day and before I go to bed I need to take antacids, it’s so bad I feel like I’m going to throw up. then theres the strange boil on my back that comes and goes, and the diverticulitis, and most recently a blocked salivary gland! also some back pain by my hump and side pain next to my left breast, I get so angry and I just want to cry all the time, it’s so frustrating, and I’m so so tired everyday.

I have seen doctors for most of these issues. I never thought they had anything to do with each other, I was sick a lot when I was a kid, I just thought I was someone that got sick a lot. Especially with the diabetes, I just assumed I was getting infections because of my weakened immune system and premature menopause.

I’m not sure when I got the hump but it’s in my wedding photo’s. Our 12 year anniversary is coming in January. My periods stopped right before I got married at 40, that’s also when I was diagnosed with diabetes, high blood pressure and high cholesterol, over the last 12 years my weight had gone up and down but mostly up 75 lbs. I eat better now than I ever have, plus there’s all the exercise everyday walking 3-5 miles a day on weekdays.

Recently I was switched to the U500 insulin, so my sugar readings have been great, finally after a few years of very high readings and feeling like crap, diarrhea and vomiting.

I’m so glad I found this website!

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Right diagnoses, drugs help woman return to normal life

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You could almost say things have returned to normal for Patricia Kleinhoffer in her family’s home, if there was a such thing.

What with living in a house with her husband, mother, brother, and four of her five non-biological children, things tend to get a little hectic, Patricia said.

“There’s no such thing as normal in this household,” she said.

But that’s just fine with Patricia, who welcomes the chance to spend more time with her family — that is, while she’s not working on her master’s degree.

Gone is the need for a nap every few hours; gone are the debilitating migraines; gone are the anxiety attacks that make it difficult for her to leave her home.

Those symptoms, a result of the Cushing’s syndrome she was officially diagnosed with in 2009, have largely subsided. Since she began taking mifepristone, which became Food and Drug Administration-approved in 2012, she also has lost almost 100 pounds and has seen a drop in blood pressure.

“I feel like a person again,” she said.

Cushing’s is a disease in which patients produce too much cortisol, a steroid hormone. It can produce tumors, diabetes, infections and other symptoms if left untreated and can even be fatal.

Patricia also had tumors, though hers were unrelated to her Cushing’s.

The medication, sold under the brand name Korlym, is a cortisol receptor antagonist, said Dr. M. Tufail Ijaz, an endocronologist at Genesis HealthCare System in Zanesville. Though it doesn’t cure patients like Patricia of Cushing’s, as they still produce cortisol, it does prevent the cortisol from taking effect.

Endocrinologist finds fulfillment in local practice

Ijaz, Zanesville’s only endocronologist, has five patients, including Patricia, currently taking the medication. Just hundreds are taking it across the country, he estimated.

On a recent weekday evening, Patricia sits on her couch surrounded by much of her family.

Though she and her husband Chris have never been able to have their own children, they’ve taken custody of five, four of whom are relatives from Patricia’s side of the family. All of them have some sort of developmental disability, she said.

At 5 p.m. on this day, the house is bustling, as four of the five kids still live there.

It’s moments such as these that Patricia said she’s glad to have back.

Not too long ago, her Cushing’s was exhausting her daily. She could barely stay awake more than two hours at a time, her memory was poor, and her weight made it difficult to even move around. Perhaps the most frustrating aspect, Patricia said, was seeing the toll it took on her children, but especially Chris, who became the main caretaker for the children.

“When you’re like that and you’re in that position, you feel useless,” she said. “It was hard for me to watch the effects it had on my family.”

Many of the symptoms started appearing long before her diagnosis, she said. Though she’s now 47, she remembers seeing signs of Cushing’s as early as her 20s. One of the first things she remembers noticing was a bump on the back of her neck, which she described as a buffalo hump.

But in the years to come, the depression, weight gain and diabetes began.

Her condition left her doctors and family searching for answers.

“We didn’t have a clue what was going on inside,” Chris said. “She was eating like a bird and she was gaining weight.”

Many of Cushing’s symptoms mimic other diseases, making it difficult to diagnose. Though she was seeing specialists in Columbus, she was never tested for Cushing’s.

“You can’t blame a lot of people for missing that diagnosis because it comes in stages,” she said.

After working for nine years as a staff assistant in the Genesis radiology department, she quit her job as her mental condition worsened. After she had her first brain surgery in 2008 to remove a tumor, she took a break from undergraduate school at Ohio University-Zanesville, as a traditional class setting became too much to handle.

Then in 2009, Ijaz opened a practice in Zanesville, and Patricia signed up for an appointment. The first thing Ijaz asked her was whether she had ever been tested for Cushing’s.

After tests came back positive, she had another brain surgery, underwent radiation treatment, and took several medications. In the meantime, Ijaz had learned of a new medication awaiting FDA approval: mifrepristone.

“We were waiting for it, waiting for her specifically,” Ijaz said. “When it came (in 2012), we started her.”

Patricia got her bachelor’s degree in 2013. She’s now taking online classes at OU-Z to get her master’s degree in applied behavioral analysis. She said she hopes to be back to work within a year, this time with the goal of working with at-risk youths and adults.

Throughout her ordeal, Patricia has maintained a sense of humor. As she sits in her home, surrounded by family, she deadpans about her weight gain and other symptoms.

She downplays her trials with not only her sense of humor but also her humility. Though she said she’s typically a private person, she wants to be an advocate for others going through something similar.

“People look at it like it’s some amazing thing and it’s not,” she said. “It’s just living.”

elagatta@zanesvilletimesrecorder.com

From http://www.zanesvilletimesrecorder.com/story/news/local/2015/05/30/right-diagnoses-drugs-help-woman-return-normal-life/28224447/

 

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Angelina S (Angel), Pituitary Cushing’s

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pituitary-gland

I am 41 years old. I have a pituitary tumor, cushings, diabetes and lumbar spinal stenosis.

I went on the depo shot in 2006 due to heavy periods.

In 2009 I was having migraines and weight gain and ended up going to the hospital. They did a scan and said I needed to get to my doctor for further treatment. She only gave me pain medicine and I ended up on blood pressure and cholesterol medicine.

In 2010 I ended back up in the hospital they did another scan and asked if I was being treated for the pituitary tumor. I was in shock I knew nothing about it. They said it had showed up in the 2009 scan. The doctor said she knew nothing about it. I went to an endo he said I needed surgery and it was causing my eye problems pressing on my nerve.

I tried to go to a neurosurgeon but he wouldn’t see me unless I had $3,000 to $5,000 since I didn’t have insurance. So I dealt with the migraines, missed out on alot.

In 2013 now that I have insurance which not many doctors especially specialist take, they wanted me to go for more tests. In 2013 I started taking herbs, which was helping to reduce my prolactin so my doctor said to stay on the chasteberry and butterbur.

In October of 2013 I was diagnosed with cushings, after all the weight gain and trouble walking. December of 2013 they finally stopped playing around and put me on diabetic pills, which I should of been on sooner.

In 2014 I kept getting sick so much I lost my job working with disabled children. In May of 2014 my gynecologist took me off of the depo shot. I kept gaining weight and it was to the point that by September of 2014 I was having difficulty walking. Doctors didn’t say much about it just told me to lose weight.

In March of 2015 I read an article about cushings and the slowing of metabolism so I started taking raspberry ketones and in 2 months have now lost 24 pounds and can walk some. It is so nice because I was basically stuck in bed. I had another MRI in April and they compared it to the one in 2013 and the tumor hasn’t grown any.

The doctors haven’t given me any medicine for the tumor or the cushings, I am trying to control it all with herbs and so far it is working out. I had to fight to even get muscle relaxers for my back. I have lost all my friends through all of this and had to move back in with my parents because I lost my apartment. I was denied for SSD, but I am trying again. I want my life back and I am fighting for it.

 

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My Journey | Living with Cushing’s Disease

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It’s hard to say when my exact “journey” began with what we now know is Cushing’s Disease.  Both my Mom and my doctor believe I’ve had this for years, when I started having period problems, migraines and unexplained weight gain in high school.

I can safely say that I started really noticing/documenting this last round of health issues in the spring of 2007.  I can remember my first doctor’s visit regarding the onset of this in spring 2006, but the majority of my health issues really began a year later.  I’d always suffered from migraines, but only around my menstrual periods.  I took birth control to help with that, and it also helped regulate my periods for the majority of my adolescent and young adult life.

In Spring 2007, however, I started experiencing cluster migraines that were debilitating, blinding and just absolutely horrible.  I don’t usually have a primary care physician because I’m, for the most part, a really healthy girl.  But I started seeing a doctor to pinpoint the cause of the migraine headaches.  I had a CT scan which came back negative for any problems.  I tried different abortive medications to treat the migraines when I had them (Imitrex) and also preventive medications (Topamax) but nothing helped.  I’m not a big fan of popping pills and insisted that I find the cause of the migraines, rather than just masking them with an expensive, non-generic daily pill.  I cut back on caffeine, avoided certain trigger foods, changed the lighting in my house and in my office, had my eyes checked and even experimented with different birth control options, since estrogen can be a huge trigger for migraines in women.  Those lifestyle changes helped a little, but I was still having them.

Read more at My Journey | Living with Cushing’s Disease.

interview

Rachel will be our guest in an interview on BlogTalk Radio  Wednesday, June 3 at 6:00 PM eastern.  The Call-In number for questions or comments is (657) 383-0416.

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In Memory of Natalie ~ April 21, 2008

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This is another Golden Oldie.  I’m not sure when it was last written or updated by Natalie but it was updated by me after she died April 21, 2008.

~~

Hi! My name is Natalie, I am 35 years old and I’ve been married for 15 years. I don’t have any children at this time, but we are in the process of adopting. We can hardly wait for our little one to show up on our doorstep. We live down in southern Maryland at this time. I grew up in southern Virginia on a farm. My Dad is still farming; he raises peanuts, corn and soybeans. He has had 2 battles with colon cancer and is still hanging in there. He gives me inspiration. I have my Mom and Grandmother still living home on the farm too and we get there as often as we can. My sister lives near by my parents and has 2 boys. They spend a portion of every summer with us.

There is so much to tell, I really don’t know where to start. I had my official diagnosis in Jan. of 1990. But after all of the information I have learned over the years, I fully believe that it could have started as early as childhood. We will never know for sure.

When I graduated from high school in 1983, I was a happy go lucky teenager with a steady boy friend and many friends. My first year of college was great. I had a lot of fun and thought I had made so many new friends. Joe (boyfriend then, now my husband) left for Marine Corps Boot Camp in the spring of 1984. That was hard but I adjusted fine and was glad to see him come home that summer. In the fall when it was time to go back to school I was a different person. I withdrew from my friends and I pretty much kept to myself. After a weekend visit from Joe, I slipped into a deep depression. I stopped going to class and to work. My so-called friends didn’t want anything to do with me. I started having headaches and dizzy spells. I was really scared. No one knew what I was feeling or would even try to understand. I ended up dropping out of school and went back home. I didn’t want a job; I just stayed home and did baby-sitting jobs. My nephew was born in August of 1985 and I took care of him full time until Joe and I was married in June of 1986.

On our wedding day I cried all through the picture taking. I was very happy but cried anyway. We went to the Blue Ridge Mountains for our honeymoon, I got stung by a bee, got a speeding ticket, and we had no air conditioning in our truck. It was truly one to remember. We came back and moved to North Carolina, where Joe was stationed at the time, and I cried for the next 2 weeks. I had never been that far away from home before.

As a child I had a bad case of asthma and now all of a sudden I’m having no problems. Little did I know that my body was treating itself with cortisol. In Jan. of 1987 I had a doctor’s appointment with my Allergist.

I was told then that I had High Blood pressure and to keep check on it. I was also beginning to be very emotional around this time. I would cry over nothing.

I started having migraine headaches while Joe was away on a deployment. My parents came and took me to the ER and because I had not been able to eat for 3 days and I was living in the dark because the sunlight was killing my head. Again I was told that it was High Blood pressure. Joe came home and left again in June for 6 months on the ship. I moved home and didn’t have any problems that summer. I moved back to Carolina in the fall so that I could get our house ready for Joe’s home coming. The real nerve racking part was that Joe’s ship was part of the mine sweeping going on in the Persian Gulf during 1987.

1988 was a pretty good year. Not too many problems except for headaches. But 1989 is a different story. I fell apart this year. In the spring I broke out in this strange rash that wouldn’t go away and I couldn’t find a doctor that could tell me what it was. Not long after that my periods stopped, we were really excited thinking that we were finally going to have a baby, WRONG! I went 3 months without a cycle; I still had the rash, headaches and high blood pressure. You would think that this would have alerted my OB GYN that something was wrong. Joe came home one day and found me doubled over and took me to the ER and we found out that I had kidney stones. Over all this time I am steady gaining weight. The stones passed and then tests were done and everything was fine there. Finally I decided to go to see Dermatology for the rash and was treated for severe acne. On my second visit with them the doctor took a look at my entire medical record and excused himself from the room. A few minutes later he returned with a doctor from Internal medicine, he took one look at me and said that I was the classic Cushing’s case. Then he went on to explain it to me. This was in Nov.1989. The tests began and I had a CT Scan done in Dec of that year that I didn’t get the results from until after Christmas. They showed a tumor on the pituitary and I was told to go to Portsmouth Naval Hospital right away. We took off and headed to Virginia not knowing what to expect. I was admitted the next day and had a week of peeing in a jug and lots of bloodwork. I was sent home with my surgery scheduled for Feb. 1990. Well, being the Navy, my surgeon was called away and my surgery was delayed until March.

I had transphenoidal surgery in March 1990 and they removed what they could but it had invaded the sinus cavity and they couldn’t get it all. I was sent home on hydrocortizone and had 2 episodes where my cortisol levels dropped too low and had to go the ER. Once I was weaned off I was okay and actually felt pretty good. I had monthly 24-hour urine tests run and they began to come back high again. I was put back in the hospital in Portsmouth and all the tests came back normal. I was sent home and a couple of months later they were high again. Again I went to the hospital and sent home normal. What’s going on here? The next time this happened I demanded that something be done. The head of the Endo dept. (I won’t mention any names, but Handiman knows him personally) tried to tell me that I was faking it so that my husband wouldn’t have to go the Desert Storm. I talked on of the interns to schedule me for an appt with the radiation oncologist and they determined that the tumor was still growing and that I needed to have radiation. Joe was scheduled to go to the desert but he was pulled from that duty and assigned to recruiter’s asst. and we moved to Virginia to my parent’s home for 60 days while I underwent 31 days of traditional radiation to the pituitary. I went back to Carolina feeling more at ease that something had been done. The rash went away but I continued to gain weight and still had Blood pressure problem, but was now being treated for it.

I was doing really well and Joe went away again for 6 months in Oct.1991. He was gone that Christmas, which was hard but I handled it ok. When he returned he had orders to go to Atlanta, GA. I was doing well and we packed up and went. I didn’t like the endo I saw there so I continued my 6-month check ups in Portsmouth when went home to visit.

In the summer of 1994, I started having problems with my left eye and thought it was allergies. I went to the eye doctor and after examining me he sent me to a Neuro Ophthalmologist who ordered a MRI and guess what The Tumor’s back! It was pressing on the optic nerve causing what they called a third nerve palsy. I was treated with medication until Jan 1995, hoping that the tumor would shrink but it got worse. I began to have double vision and my left eye closed completely. In the spring of 95 I again underwent Transphenoidal surgery at Emory University under  Dr. Oyesiku. He was great. I also had a great endo there, Dr. Lewis Blevins (he is at Vanderbilt in Tenn. Now). They still could not retract the entire tumor so I went back in August of that year and had Sterotactic Radiation Surgery. That was a one time radiation and it was a real experience. I had a metal Halo drilled into my head and I had CT scans and MRIs done with it one to determine the exact location of the tumor, then I was placed in a chair that spun in very slow circles while the radiation was being done. When I arrived back in my room they couldn’t find the key to take the halo off, so I had to wear it for another 2 hours until they found it.

It has now been almost 6 years since the last radiation and my current MRIs show some shrinkage of the tumor. I am currently battling high cortisol levels again but I think if we can find the right dosage of medicine it will level off. I am currently taking meds for: thyroid, high blood pressure, estrogen, diabetes, medication to control cortisol, allergy medication and every 3 months I take hormones to make me have a menstrual cycle. But over all I am doing OK.

My husband is out of the Marine Corps now and we live in Maryland. We are in the process of Adopting. We are really excited about this and can hardly wait to get our little one. My husband and Family have been so supportive of me through all of these years and I don’t know what I would have done without them and my close friends.

I feel like I have made many friends here also. This site has been a great help to me and I hope that my story can help someone else.

Take Care everyone!

Natalie

MaryO Note: Natalie had a BLA in March, 2008. She died April 21, 2008.
In Memoriam

Natalie Fay

Monday, April 21, 2008

2001 Cushing’s Lunch. From
left: Joe (Natalie’s husband), Natalie and Linda

Natalie Fay (Natalie65), died April 21, 2008. She was only 42 and had recently had a BLA. I first
met Natalie at a local lunch in November of 2001 and have seen her seval times
since then.

Natalie started the original “Dammit Dolls” that circulated
around the country until people refused to pass them along anymore.

Dammit Doll.

Natalie also made counted cross-stitch
Cushing’s Awareness Pins:

Natalie’s bio… http://www.cushings-help.com/natalies_story.htm

Some recent past
posts.

February 10, 2008

going to UVA I am going for my first visit with Dr. Hanks at
UVA on the 20th. I will also see Dr. Vance that day. I haven’t seen her before
either. I am planning on having bilateral adrenal surgery in March. I am a
little nervous about this, but it is going to be a positive thing I hope. I
would love to hear from anyone who has had this done so that I will have an idea
of what to expect. after surgery.

Thanks! Natalie

March 18, 2008

surgery update Hey everyone!

I’m back! It has been a
very slow week and I’m just satrting to feel like moving around again. I had BLA
on the 10th and came home on friday. My parents have taken my boys (3 & 6)
home to Va. I have missed them so much this week, but I think it was the right
thing to do. I don’t know how I would have done it without them. I am still very
sore and tired at times, but I’m coming along. Sorry this has taken so long to
get out to you guys, I thought things were taken care of but I was wrong. Oh
Well! I’m doing good and I’ll keep in touch. Thanks for all of your thoughts and
prayers.

Natalie

Message Board Signature:

pit surgery 1990
traditional 30 days
radiation 1990
pit surgery 1995
sterotactic radiation surgery 1995
2004
still have remaining tumor
cortisol levels still off balance
BLA March 10,
2008


Tributes and Memories on the message boards…


Our first local DC area Cushie lunch November 17, 2001 with Linda, Jayne, me and Natalie – all in Cushe Colors [Photographer: Robin]

Our first local DC area Cushie lunch November 17, 2001 with Jayne, Linda, Natalie, MaryO and Dianne [Photographer: Robin]

Our first local DC area Cushie lunch November 17, 2001 with Jayne, Linda, Natalie, MaryO and Dianne [Photographer: TomO]

Our second local DC area Cushie lunch February 9, 2002 all the families [Photographer: Robin]

Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO [Photographer: Robin]

Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO [Photographer: Robin]

Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO. LynneInVa made the roses for us from candles. [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with Pat, MaryO, Ruth, Natalie, Susan, Jayne [Photographer: TomO]

Our next local DC area Cushie lunch May 4, 2002 with Pat, MaryO, Ruth, Natalie, Susan, Jayne [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with Joe, Jed and Catherine [Photographer: Robin]

Our three families: Tom and MaryO, Natalie and Joe, Robin and Jayne…and kids [Photographer: a waitress]

Our three families: Tom and MaryO, Natalie and Joe, Robin and Jayne…and kids [Photographer: a waitress]

TomO being silly, stealing Catherine’s nose. [Photographer: Robin]


http://www.wrightfuneralhome.org/index.cfm

Natalie Grissom Fay
(June 11, 1965 – April 21, 2008)


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Courtland, Virginia– Natalie Grissom Fay, 42, passed away April 21, 2008 at St. Mary’s Hospital in Leonardtown, Md. She was born in Petersburg, Va, a daughter of Edward Scott and Nan Lucy Grissom and was a 1983 graduate of Southampton High School. Natalie actively supported several Cushing Support Groups, and was a member of the Patuxent Presbyterian Church. Surviving in addition to her parents is her husband, Joseph P. Fay; two sons, Joseph Edward (Jed) Fay and Nathan Lee Fay all of Hollywood, Md.; one sister, Annette G. Stephenson of Courtland, Va.; two nephews, Scott and Vance Stephenson; and her father-in-law, Edward K. Fay and wife, Sunee, of Deltona, Fl. The funeral will be conducted at 2 pm Friday at Wright Funeral Home with the Rev. Edmund Ellis officiating. Burial will follow in Riverside Cemetery. The family will receive friends from 7 to 9 pm Thursday at the home of Edward and Nan Grissom, 16046 Wakefield Road, Courtland, and suggest that in lieu of flowers, memorials may be made to Cushings Help, c/o Mary O’Connor, 4094 Majestic Lane, #328, Fairfax, Va. 22033.

Helena (hummerbird), Steroid-Induced Bio

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Hi! My name is Helena (hummerbird). I am going to be 60 next week, Nov 16. I have come full circle with this.

I knew I had adrenal problems 12 years ago when I got stuck in the ‘fight or flight reflex’. I paid to have saliva tests done and it showed that I was dumping cortisol into my system early evening with my lowest point being 6am in the morning. I showed my allopathic doctors the tests but none would put any stock into saliva testing and just blew me off (this was 2002).

Some of my first signs were extreme insomnia yet when I did sleep I would still feel extremely fatigued, flushing of the face, neck, chest, and back, weekly migraines and daily headaches which started after I was 45, unexplained weight gain, crazy buzzy internal tremor adrenaline smacking (I could actually taste it!) jitters that would not go away, hypersensory (especially to light and sounds), feeling painfully sunburned even though I had not been out in the sun, pain in my legs going way beyond restless leg syndrome, totally fearful of everything, developing a hump between my shoulders and a host of other symptoms.

I was first diagnosed with fibromyalgia 03, then SLE Lupus 09 (positive ANA but no markers).

We moved to Colorado in 2012 and then back to Oregon 2014 and when I saw my rheumatologist again after 2 1/2 years (Oct 2014), he said it looks like you have Cushings? So at the moment I am suspected to have Cushings. I have been reading up on it and I am totally textbook (including the fact that I could literally step into the profile of the picture of the woman with Cushings).

Not sure if this is drug induced or if the prednisone finally brought out the demon that’s been tormenting me. My rheumie wants me to slowly wean off the prednisone. My dosage was 5mgs per day unless I was flaring (dealing with horrible muscular pain and internal tremors) then I was to do a step down starting at 30mgs back to 5mgs. I probably do a step down every other month.

My internist in Colorado wanted me to get off my Percocet 10/325mgs 4 times a day and try to deal with the pain. For the first time in my life I used MJ edibles to get off the Percocet with only a week of hard withdrawals. I was on the MJ edibles for 3 weeks until I realized I was allergic to it! I now take 2 Tramadol 50mgs 3 times a day to control pain. On the negative side this is not working because I have too much breakthrough pain but on the positive side I have a clearer head (I’m able to focus and read again!).

Over the years my days have gone from one ‘down’ day a week to a whole month of down days. I have lost my quality of life and pretty much my social skills. My venturing now is from my bed to the bathroom, kitchen, and possibly my recliner if I’m not feeling too dizzy.

I have three saints in my life, my husband and my two girlfriends who take care of me. I know that God has a plan for my life and I have faith in knowing that I’m going to feel well again some day. It has been a long and expensive road to travel to get to this point. I am not looking to have Cushings but it is a diagnosis that finally fits completely. I’m looking forward to meeting the support group.

Love you all and thanks for taking the time to read my post.

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Elizabeth (ToxicNudibranch), PCOS Bio

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This has been a difficult road to even get to a tentative diagnosis, and I know it’s going to be even more difficult going forward, but it’s better than nothing, eh?

I was a pretty healthy kid. I didn’t eat that well, I wasn’t that active, but I was always strong and fairly lean. When I was 19 that all changed. I’m 27 now, and have just barely found an Endo who was willing to order the obvious tests for my obvious signs. It’s been frustrating. To wit:

*2006 I move to the dorms and put on what I assume are the Freshman 25 within the first semester, even though I’m much more active and eating markedly more healthfully than I was ever raised to. 190lbs
*2007-2008 Job prospects are not great, so I’m dead broke. I end up leaving college for the time being. I’m walking everywhere since I can’t afford a car and public transport is not adequate, and eating less than I should. Weight stabilizes at 195lbs
*2009-2012 I’m not eating much more, just better (lean meats and leafy veg instead of rice and beans for every damn meal!), but my weight starts piling on again (30 in 2 months). I begin experiencing migraines, marked fatigue, and anxiety. Fat settles entirely around middle. Face still relatively normal. Continue moderate gains thru weight watchers, south beach, Atkins, etc. Bring concern to PCP, where I am accused of mis-stating caloric intake and asked to track food. I do, and on my follow-up appointment, my PCP just looks at me like I’m lying and and offers stimulant diet pills. I decline. Hirsuitism increases, as does fatigue. OBGYN diagnoses PCOS, I start Metformin 500mg/2x No reduction in weight. 220lbs
*9/2012 I put on another 15lb in 4-5 weeks. Face is getting fatter, gut sticks out like a basketball. I know something is very wrong, and by this point I’ve heard something about Cushing’s and thought “Hey, that looks exactly like me.” I go to see my first Endo. He notes that I have the hump, torsal weight gain, hirsuitism, weak limbs, easy bruising, anxiety, etc. Mild striae. I even show him pictures of myself from 6 months ago. The change in my appearance is enormous. He waves those away and runs a single midnight cortisol (inconclusive) and an8am dex test (kinda supressed) and says that I’m just fat because I’m clearly stuffing myself with chocolate cake on the sly and totally lying about the 5-8 miles *a day* that I’m running by this point. He recommends a more restrictive diet or gastric bypass. And did he mention that he just happens to be able to provide me a referral to a good colleague of his that runs a whole surgical center that will throw in some laser hair removal with Lapband? Asshole. I feel degraded and helpless. 235lbs
*10/2012-5/2013 Continued migraines, increasing sinus pressure and constant sinus infections, eyes very irritated. PCP blames allergies and stress. Could be migraines, could be cluster headaches. I take at least 1600mg of Ibuprophen daily. I can’t run anymore because my ankles and knees are hurting pretty badly, but I start swimming again. Continued creeping weight gain despite increased exercise. 240lbs
*6/2013-10/2013 Migraines increase. Mis-diagnosed with multiple sinus infections. (5/28/13, 6/19/13, 7/2/13, 9/10/13, 10/18/13) The sinus pressure and pain never seem to get any better, so I go see an ENT. He says we may have to roto-rooter my sinus cavity to correct the constant inflamation. However, once he reviews my CAT Scan, he says I have only the mildest of swelling in my sinuses. Whatever it is, it’s not my sinuses.
*11/2013-4/2014 I develop double vision, my right eye stops tracking with my left, both eyes are bugging out (exoplthalmos). ER doctor and Opthamologist diagnose it as Thyroid Eye Disease/Graves. I have no symptoms of hyperthyroidism/Graves, (TSH, Thyroid antibodies all negative/normal) but my main concern is regaining sight, and the course of treatment is the same, regardless. First course of Prednisone. Rapid weight gain of roughly 20 over 3 months. I track and weigh my food obsessively, averaging 1400kc/day, which should be resulting in steady weight loss. In addition to smimming, I adjust my commute so I walk instead of drive and am doing body-weight yoga. Strength is a fraction of what it used to be. My striae get worse, as does my torsal fat distribution, hirsuitism, fatigue, hair loss, hump, mental fogging, etc.  I’ve stopped wearing pants and moved entirely to dresses. 260lbs
*5/2014 I’ve been weaned off Prednisone entirely. My eyes look normal again. I’m still eating well, but I feel so badly and I’m so tired that I can’t exercise much anymore. My heart starts pounding from relatively mild activity. I’m not experiencing migraines anymore, but I just plain don’t feel good. My moon face gets even worse. Everything gets even worse, actually. My weight is the same, but I can’t lean my head back because of the buffalo hump and I can’t even properly snuggle with my fiance because I’m feeling choked by the massive beer cozy o’ fat that surrounds my neck.
*6/2014 My eyes are swelling again. Thyroid levels still normal and I don’t have any markers for Graves specific antibodies. We begin 2nd course of Prednisone.
*8/2014 I’m off Prednisone again. I know something is very wrong. I go to another Endo, Dr. Knecht, who actually listens. He reviews my medical history, looks at my clear physical symptoms, and orders a crapload of labs. The results are pretty clear. It’s Cushings. He thinks there’s a good chance it’s cyclical. Now we start in to determine exactly what kind we’re dealing with.  It’s very likely that all the things I’d been suffering from (the PCOS, the pain/pressure that turned into exoplthalmos, anxiety, migraines) have been directly related to this condition. In Dr. Knecht’s office, I cry from relief. When I get home and tell my partner, I cry because I’m kinda scared.

And then I found you guys. And now I’m really scared. Hopeful, still, but terrified. Because the clinical, dispassionate descriptions about the surgeries that may be needed to “cure” (or at least knock into remission) Cushing’s are very different than yearing about the actual day to day experiences of living with a messed up or woefully inadequate adrenal/endocrine system. I’m confident I’ll get through it, but damn. This is going to be really hard.

I will update more as we get more conclusive answers and I begin treatment.

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Amanda, Undiagnosed Bio

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golden-oldie

 

I have been battling sickness for about a year and half now. It started with my gaining weight pretty rapidly (about 20 lbs. in a month-month and a half). I’ve never been super strict about my eating or exercising but I don’t eat a lot of junk food – don’t buy any chips, soda, cookies, etc.) I also do remain pretty active in the work that I do as an elementary teacher. I’ve never had a problem with my weight before and this particular summer I was teaching 3 sections of dance so I was getting plenty of exercise.  I told my family practioner about the weight gain and he told me that metabolism slows down as you age. Ok. I was 26 when he said this and my metabolism must have went down to 0 for me to gaine so fast! I decided to just be more concious of what I ate and did.

As the months went by, I went on a business trip to Boston. During this trip I was inrcedibly fatigued and felt awful. I thought perhaps I was coming down with something and was put on antibiotics that did nothing to help. In August of 2010 I began to have debilitating headaches. I could not get the headache to go away with any over the counter pain reliever and ended up going to a doctor who diagnosed me with migraines. I tried a few migraine medicines with no luck and had a CT scan that showed nothing abnormal. I was then referred to a neurologist.

I mentioned the weight gain to the neuroogist who thought it was odd that I would gain weight so rapidly, but he pretty much dismissed it as a symptom and said I was getting headaches from overuse of medication. I knew that could not be right, but thought I’d try just taking nothing for a while to see if it helped. It did not. The same neurologist then recommended physical therapy, which helped ease the pain but did not take away the headaches. His final thought was that I was depressed and put me on depression medication.

During this time I was working as a teacher and missing work quite often. I felt awful every day. I continued to gain weight, feel fatigued and weak, have mood swings and began developing stretch marks and acne. I always had wonderful skin and it seemed no matter what cleanser I used, I couldn’t control the breakouts.

I saw another neurologist that was recommended by a parent at my school. She scheduled me for an MRI and a lumbar puncture. My pressure came back a little high during the lumbar puncture and the MRI was fine so she diagnosed me with Pseudo Tumer Cerebri. I took medication for this condition, but ended up with no relief.

I ended up spending a week in the hospital because I couldn’t stand the pain in my head and I was so emotional over the whole experience of not having any answers. They pumped me full of pain medication and migraine drugs. At the end of the week when I still had no answers, I ended up going to see a neurologist that was a headache specialist.

The headache specialist diagnosed me with meningitis. No tests but I got a diagnosis based on my story. She put me on steriods. I began to feel better for a few days. I returned to work and thought I had finally found my answer. Then everything came to a screeching halt and I began to feel awful again. The headache specialist was still convinced it was meningitis and said I was just more susceptible to migraines from the meningitis. I again went through a whole gamot of migraine medications to no avail.

I ended up leaving my job and moving close to my family so I could have support and people to help care for me. I returned to my family doctor who decided to do some blood tests. After running the blood tests, my doctor said that my cortisol level was high and I might have cushings which would explain all my symptoms. I had never heard of Cushings so I began researching it. Once I read the symptoms and others’ stories of how they felt and what they went through I was so sure that here FINALLY was my answer. The doctor did a low dose dexamethasone test which came back with normal levels and it was decided I did not have Cushings.

I was devestated. Not that I wanted to have this illness, I just wanted an answer and thought for sure this was it! I even asked my doctor to retest me which she would not do.

I went to see another doctor. I began going through migraine medications again, acupunture, chiropractor, etc. to find some relief. I finally brought the idea of Cushings to this doctor. She ran some blood tests again. Everything came back with normal levels except my potassium was low. Even though my blood didn’t show it, I’m still convinced I have Cushings and my doctor agreed to send me to an endocrinologist.

I have an appointment on Monday with Dr. Findling in Menomenee Falls. I found him on this site as one of the ‘helpful doctors’. I’m hoping that he can finally diagnose me and I can get on the road to recovery.

I miss my life. I’ve lost friends due to this illness. My marriage is suffering. I cannot work. I basically have no life at all because I rarely feel well enough to do anything and no one understands. Not to mention the psychological toll being sick with no answers has on a person as well as watching my body change so much and not being able to do anything to control it! I want an answer and I want to finally know what I can do to help myself get better.

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