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Alex C (Alex C), Undiagnosed Bio

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Hi, My name is alex and i honestly have no idea what’s wrong with me.

about 5 years ago i became ill, all of a sudden went from a healthy strong active person, to feeling weak, tired, i gained weight, my hair started thinning, among other symptoms, i was diagnosed with diabetes, my sugars were in the 500’s then one day about 6 months later, my diabetes went away, no change in diet, no change in lifestyle, just up and went away…but it was replaced with excruciating pain, throughout my body mainly in my legs and arms, they said its pribably neuropathy… but i had only been diabetic for 6 months, they tested and found no neuropathy…they said it might be MS, they tested nope not MS….they said it might be fibromyalgia…i don’t have trigger points no not fibromyalgia,,,i started getting infections….gum disease…eye infections… bites and scratches on my legs which used to heal quickly no longer healed and when they did they left scars and marks on my skin….the pain was so unbearable… they tried all the neurological meds, cymbalta, lyrica, etc….. nothing helped…

finally they gave me fentanyl patches and norco and i was able to manage the pain… but still no diagnosis… i saw hemotologists, oncologist, because at one point they thought i had luekemia which i dont… i saw a rheumotologist and nothing…my pain management doctor said i had a bulging disc in my back and wanted to give me steroid injections in my spine…he said that’s whats causing the pain….but the pain was in my legs and arms a bulging disc in my lower spine would cause pain in my legs and lower back only so i disagreed with his assesment…still i got 1 injection and it didnt help… he said oh it could take up to 3 for you to feel relief i refused the injections and he stopped giving me pain meds, he said since i wasn’t cooperating he couldn’t treat me anymore… so i suffered

one day on an emergency room visit i saw a doctor and told him my symptoms… (i would tell any doctor that would listen to try to find something.. i know something is wrong with me) he said have your pcp test your cortisol levels….well my corisol levels were 5 times the normal count.. they did the test twice…and both times they showed 5 times the normal level…now i don’t have the moon face or the buffalo hump but i do have every other symptom of cushings…i went to and endocronologist who right away said… you don’t have cushings…this was over the course of the first 2 years… now 3 years after that and 5 years from the start i’m still suffering the pain i’ve gotten used too for the most part but sometimes it;’s sooo bad i have to go to ER and get morphine and dilauded to help…last week i was in the ER and they gave me 3 shots of IV morphine within two hours and it only lasted about 20 minutes..each time… finally a shot of dilaudid helped and i was able to come home and rest ….. still no difinitive diagnosis other than chronic pain…and my diabetes has come back recently…i no longer see doctors because i have never gotten help from them…i’m lost and don’t know what to do anymore…if it wasn’t for my kids.. i have 3 i don’t think i could go on…invisible illnesses are real and devestating…

 

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Marie C (MarieConleyHbg), Pituitary/ BLA Bio

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Marie Conley is a consultant focusing on engagement and stakeholder strategies and fund development for a variety of clients through her company Conley Consulting, LLC.

During her tenure in politics (1994-2009), Marie was a trusted advisor to top-level government officials and private sector organizations beginning in 1994 as the scheduler to Governor Tom Ridge. In 2009, as a senior level fundraiser, strategist and event planner, she made a successful transition from Pennsylvania’s highly competitive political landscape into the equally challenging field of non-profit development as director of Penn State Hershey’s Children’s Miracle Network. In 2012, her focus was working with Sue Paterno, wife the late Coach Joe Paterno, to assist with a number of initiatives around the issue of prevention and awareness of child sexual victimization focused in the arena of higher education. Marie continues with the national experts Stop It Now! on its Circle of Safety for Higher Education. ™

Marie never takes any professional or personal task at face value. She is always looking for ways to improve efficiencies, outcomes and most importantly calls upon herself and those around her to do the right thing for the right reasons. Her accomplishments in such a short period of time at Children’s Miracle Network are only one example.

Marie was unanimously granted Governor Emerita status by the Pennsylvania State System of Higher Education for her more than 13 years of service. Until she submitted her resignation in May 2016, Marie served as the Vice Chairman for the Board of Governor member of the Pennsylvania State System of Higher Education and was Chair of the Academic and Student Affairs Committee. She spearheaded significant changes in policy regarding the recruitment and hiring practices for university presidential and chancellor searches and has re-evaluated and changed the policy for university presidential evaluations. Marie was first nominated in 2002 and was re-appointed by Governor Ed Rendell in 2004 and re-appointed by Governor Tom Corbett in 2012. From 1997 to 2011, Marie served as a Council of Trustee for her alma mater, Bloomsburg University of Pennsylvania. She played a critical role on the Board of Lincoln’s Footsteps commemorating the 150th anniversary of the Lincoln’s Gettysburg Address. She continues to be a guest speaker and panelist on development and stakeholder engagement for a political and non-profit organizations.

But today Marie is facing her toughest battle yet. In 2012, Marie was diagnosed with Cushing’s Disease – a disease so rare it affects less than ten people per million each year. She has fought through dozens of hospital stays and numerous surgeries – including brain surgery – and still struggles daily to run her successful consulting business and a household that includes a husband and young son.

There’s a reason former Pennsylvania Governor Tom Ridge calls Marie “one of the most indefatigable people I’ve ever known.” Because while Marie drew the short straw in being one of those ten-in-a-million with Cushing’s, she has chosen not to simply live with the disease, but to use her skills honed in political campaigns to raise awareness and to fund critical research that will help those around the world who are living with this insidious disease. Already, The Conley Cushing’s Disease Fund has raised tens of thousands of dollars to fund research, to educate doctors on the signs of Cushing’s and to support her new book, A Cushing’s Collection.

Marie is not defined by Cushing’s. She is inspired by it to help others – and to leave a legacy of hope.
Marie hails from Bucks County, Pennsylvania; she lives in Elizabethtown, Pennsylvania with her husband, Chris Lammando, and their son, Carter.


The author of A Cushing’s Collection: A Humorous Journey Surviving Cushing’s Disease, Diabetes Insipidus, and a Bilateral Adrenalectomy is a member of the Cushing’s Help message boards.

From Amazon:

Diagnosed with a rare disease that only affects between two and ten people per million, Marie Conley used emails to communicate with family, friends, and co-workers to keep them apprised of the diagnosis and prognosis of Cushing’s disease and the many complications she experienced on this journey. Her ironic humor and raw, emotional approach helps bring hope to those touched by this rare and unrelenting disease.

In her mid-thirties, Conley, who strived to keep herself healthy while maintaining the delicate balance of raising a young child, keeping a home, and a demanding career, began to experience a variety of unexplained maladies inconsistent with her life style.Because of the elusive nature of Cushing’s disease, the treatment is a long and complicated process of trial and error. At this time, there is no cure, largely due to the fact that Cushing’s disease is considered an “orphan disease.” As is her nature, she has decided to “adopt” this “orphan” and is doing everything she can to bring awareness to this disease.Conley’s tenacious spirit and determination would not allow this insidious disease to triumph over her life. Armed with her laptop as the only weapon available in the sterility of the recovery room, the author attacks the keyboard with a vengeance to let friends and family know that in this battle, there is no surrender.

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Angie T (Angie), Pituitary Bio

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I am a 44 years old. I started gaining a lot of weight in 2015 thought it was from taking insulin for my sugar.

I went to my Primary care doctor in August of 2016 and she took 1 look at me and told me that she was going to test me for Cushings . That was the 1st time a doctor had mentioned it to me. She sent me for the test and I tested positive. I was already seeing a Endo dr for my diabetes and she referred me to them for the Cushings. They started their series of test and told me in November that I did have Cushings.

They did a MRI with contrast and without and I have a Pit Tumor on my Left Gland that is 7mm by 8mm by 5mm. I am trying to find a surgeon in my insurance network so I can have my surgery. I have a lot of other health issues too.

I hope when I have my surgery that it takes care of some ot my other problems.

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MizBellaTru, Undiagnosed bio

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golden-oldie

A Golden Oldie from August 12, 2007

I’m a 48-year old female who has had an awful lot of illness over the past 12 years and starting to wonder if there could be some connection to all of it even though my doctors don’t think there is. They just think I’m one of those unlucky souls who just is sick alot and doesn’t have very good genes.

Here’s what I can tell you about me health-wise:

In 96 I had to have my colon removed due to Ulcerative Colitis. This resulted in 3 surgeries.

In 97 I developed Iritis (inflammation of the eye) and one of the docs said that because I no longer have a colon and have an auto-immune disorder that now my whacked out immune systems has started attacking my eyes. I’m in remission currently but this will be something I’ll have to deal with for the rest of my life.

Things were fairly quiet for a few years with the exception of having Iritis flare-ups and don’t remember anything else going on until 2000 when I broke my left ankle (badly) and now have a steel plate with 11 bolts holding my ankle together. (This happened in 2000 and I still have problems with that ankle).

In 2001 I was diagnosed with Diabetes. This had run in my family (my great-grandmother had been diabetic and I had been borderline diabetic as a child). I started out taking oral medications but after a couple of years this wasn’t enough and it resulted in me being on insulin now for the past 3 years. (Sugars still aren’t under control).

Also in 2001 I had some kind of seizure. Was taken to the hospital and after a lot of blood tests they thought it might be due to a calcium deficiency and recommended I go see an Endo. However, when I wen to see an endo he didn’t think my calcium was deficient enough to cause what had happened and recommended I go see a neurologist. The neurologist thought it was some kind of seizure too and ran some preliminary tests on me but he wouldn’t return any calls for me to find out what other tests should be run. I gave up on him and still never had an answer about what had caused this very weird episode. (What had happened was that I had been at work and all of a sudden my jaw started to tighten up and my head cocked to the side and I started making all these weird grimaces. My mouth became locked up so could barely get any words out. I couldn’t turn my head – it was as if it was locked in place. This is what led the ER (after running blood tests) to determine that they thought my reaction was due to low calcium. To get my rigidity to loosen up, they gave me several shots (can’t remember now what it was) but it finally had allowed my body to loosen up enough that I could finally leave the hospital. This event lasted several hours and moved in to my arms where they became so rigid that it felt like someone was turning my arms inside out. I was completely exhausted after that had happened.

As time went on I would have periodic episodes of what was thought to be a seizure and I just started to learn to live with it. Sometimes only my face was affected and sometimes my whole body would become very rigid and after several hours these episodes would pass but I was always left feeling completely worn out.

Throughout all this time my Diabetes has been almost impossible to get it under control. My insulin doses would be increased but I never could get my sugars to stabilize.

In the spring of 2006 I developed some type of wound on the top of my left foot. It spread and ulcerated and I went to several types of doctors and a couple of them thought it might have been a spider bite of some kind and due to the diabetes it wasn’t healing. I was put on various types of strong antibiotics but nothing was helping. I finally was referred to an infectious disease expert and he said I had some type of serious strain of staph infection and he finally was able to get me on an antibiotic that started to help me heal. I’m now left with some horrible scarring on my left foot but at least I didn’t lose my foot which is what I thought might happen.

In August of 2006 I developed Bells Palsey on the left side of my face. I went to a neurologist (different one from the one I had gone to for my “seizure”). He was the one who diagnosed me with Bells. In the process of seeing him I had one of those episodes in his office and he watched me very closely as it evolved and told me that he thought I had a form of “Dystonia” which is a movement disorder. After a couple of months my Bells resolved although I do have some permanent nerve damage in my face which affects how I smile but it seems to only be really noticeable to me.

In late fall of 2006 I noticed my right ear was hurting quite a bit and was draining. I went to this ear doc and she determined I had a ruptured eardrum with a huge hole that might require surgery. She also determined (after some tests) that I had an infection in the mastoid and said it was imperative that I not let any water get in my ear so that the ear could dry out enough and the infection to clear up before I have surgery. She said it could take a couple months before my ear might be dry enough and told me to come back in a couple of months. During that first visit she also did a hearing test on both ears to establish a baseline. I came back to see her in Jan 2007. When she looked at my ear she said it looked like the eardrum was starting to show some signs it was trying to heal itself (because originally she thought the hole was too big for it to ever heal on its own). She told me to give it some more time and come back again in a couple of months. I came back to see her in April 2007 and the hole was still showing some progress in trying to repair itself so she said she didn’t want to operate if my body could heal the hole. In June of 2007 my left ear started producing a very high pitched ringing sound. I’m not talking a little ringing sound but a sound loud enough it kept me up at night. I had noticed my hearing had diminshed quite a bit in that left ear. I then developed some dizziness and a sense of fullness in my left ear and noticed that when the barometric pressure changed my head felt like it was going to explode. When I went back again to the ear doc she surmised that she thought I now had developed Menieres. She put me on a diuretic and a steroid as this is supposed to help with Menieres but it didn’t seem to do a thing for me. The ear doc ran another hearing test and found that my hearing in my left ear had diminished since it was first baselined last December.

So, a little over a week ago my right ear (the one with the perforated eardrum) started hurting quite a bit and the ear started draining. Again I went back to the ear doc and she determined I had a sinus infection and an ear infection so she put me on an oral antibiotic and antibiotic ear-drops. It’s been a full 7 or 8 days on this antibiotic treatment and my hearing in my right ear has diminshed considerably to where I can hardly hear a persons’ voice on the phone. I’m to stay on this present course of antibiotics for another week. In the past I’ve always responded to antibiotics but it doesn’t seem to be helping this time. My right ear has been draining for a whole week and it’s never done that before.

Also I want to point out that I gained a lot of weight over the last 15 years and I’m now about 120 lbs overweight. I gained 12 of those pounds in just less than 2 weeks recently and my eating hasn’t changed. This is what made me start looking on the internet about rapid weight gain when I came across Cushings and started wondering if I could have this.

At this time I’m waiting on some results from a urine test to see if I’m starting to have a problem with my kidneys because I’m dealing with a lot of edema lately. I don’t know if all the problems I’m having such as the poor wound healing, edema, diabetes, developing high blood pressure are all separate things or more related to my Diabetes.

So at this time I can’t claim that I’m a “cushie” because that’s not been identified yet but I’m thinking that I should get tested for it.

Anyway, that’s what’s going on with me right now.

Thank you for reading this very long bio.

MizBellaTru

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Raquel O (Raquel8a) Adrenal Bio

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undiagnosed2

 

I’m not sure how long I’ve had Cushing’s. I think it’s been a slow progression for about 20 years.

In April my father passed away and we were on our way to Church for his mass. We got smashed from behind turning into the Church’s driveway, we ended up in an ambulance. At the hospital they did a full body CT scan. (I would have never gotten one if the accident never happened.) They found a growth on my adrenal gland. That started the ball rolling. I believe my father was responsible for helping me discover the problem.

I started looking on the internet about adrenal tumors. It talked about Cushing’s. Each and every symptom they described I had. It explained soooooo much. I thought I was going through early menopause. I was suicidal, and severly depressed, on 2 different medications to help. I chalked everything up to being “fat”. I didn’t go to the doctor because I didn’t want to hear “you just need to lose some weight.”

I went to an endocrinologist, she started me on the first urine test and some blood work. Two weeks later, I went back to get the results. I told her about Cushing’s and that I had all the symptoms. She said the results were abnormal but it could be a number of different things. She wanted to repeat the urine test and said that I SEEMED to be convinced that it was Cushing’s Disease. Needless to say I felt pretty stupid. When the results came back guess what?

After the accident the tumor seemed to have gotten aggravated. I was having a lot more confusion, loss of focus, etc. I chalked it all up to the accident, maybe it was a concussion. Since then it’s become worse. I get frustrated and depressed because I’m experiencing a lot more forgetfulness, and confusion. My depression meds are holding me up but barely. I’m tired all the time. My husband sometimes, I feel, doesn’t believe me and gets frustrated. My kids are always asking me if I’m okay (and usually the answer is no). I don’t want them to grow up remembering how I was always so sick and tired.

My next step is to get the tumor removed. The neurosurgeon is busy and my tumor is not life threatening so I had to wait a long time (couple of weeks) for a consultation. I finally saw him an now I’m waiting for the ENT to get back from vacation to set a date. So, I’m in limbo. Not helping!

My next step is to get the tumor removed. The neurosurgeon is busy and my tumor is not life threatening so I had to wait a long time (couple of weeks) for a consultation. I finally saw him an now I’m waiting for the ENT to get back from vacation to set a date. So, I’m in limbo. Not helping!

After the surgery am I supposed to be “normal?” I’m afraid of “normal.” I don’t know what it’s like to be “normal.” Will I be a different person? Will I no longer be fat? Will I get rid of the hypertension, and diabetes? the redness everyone thinks is sunburn? will I be able to get into a standing position from the floor? I’m very FRIGHTENED of the “normal” that I’m supposed to become.

The surgery, no problem, my dad’s watching over me. I’m convinced he’s responsible for finding the tumor and will help me through.

Thanks for taking the time to read this, although this bio only scratches the surface.

 

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In Memory of Jenni Moore ~ January 25, 2016

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in-memory

 

A young woman struggling with ill health after developing a tumour died from an overdose after “illicit insulin” was brought into the Norfolk and Norwich University Hospital last year, an inquest heard.

Jenni Moore passed away at the intensive therapy unit on January 25, more than two weeks after sustaining brain damage while an inpatient at the hospital.

The 26-year-old from Halesworth had been admitted in December with complications from two unsuccessful operations to remove a tumour of the pituitary gland.

A Type 2 diabetic since 2002, Miss Moore suffered from emotionally unstable personality disorder and an abusive relationship, before a diagnosis of Cushing’s disease as a result of the tumour.

Consultant physician at NNUH Dr Franscesca Swords said Miss Moore had been exhibiting “alarming symptoms”.

“Cushing’s can cause Type 2 diabetes and needs much higher levels of insulin for it to work,” she told Norfolk Coroner’s Court.

“She was having incredibly low sugars, which is consistent with too much insulin. We had been reducing her dose steadily.

“We were giving her a fraction of the insulin she had been taking but her blood sugar was still low. Eventually the realisation came to ward staff there was something else at play here.”

Staff then began to discover insulin pens hidden in her room. During an investigation Norfolk Police interviewed Miss Moore’s partner Derek Soanes, who admitted he had brought her insulin pens at her request. No further action was taken.

Sarah Kennard, a lead health officer with Norfolk and Suffolk NHS Foundation Trust, said in a statement that during a risk assessment in March 2014 Miss Moore said she “thought she was insulin resistant” as a result of her Cushing’s.

Assistant coroner for Norfolk Nicholas Holroyd recorded a narrative verdict.

“Jenni suffered significant and unhappy health conditions for a number of years,” he said. “Cushing’s exacerbates the diabetic condition to make the patient yet more vulnerable to sugar or hypoglycemia so higher doses of insulin are needed to correct the situation, which made her resistant in a sense.

“There has been evidence insulin was being brought to her in the hospital she should not have had. I do not believe she intended to take her own life. Nothing had occurred to drive her to an extreme act.”

After the inquest Miss Moore’s brother Joe said: “I loved my sister and so did the rest of my family, and we miss her every day.”

From http://www.edp24.co.uk/news/diabetic_died_after_overdose_from_illicit_insulin_brought_into_norfolk_and_norwich_university_hospital_1_4614300

Barbara (2maro), Pituitary Bio

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golden-oldie

 

After being told for ten years that all of my “problems” would just go away if I “lost a little weight, I fell and hit my head on my fireplace hearth requiring several stitches.

When it was time for them to be removed, I went to my new Internal med Dr. to have that done and ask if I was having a reaction to one of my meds as my face seemed swollen.

She had seen one case of Cushings in it’s recovery phase, but had studied to help that patient. She suspect, tested and diagnosed with me with Cushings in December of 2001.

I spent the next few months searching the net, reading this site and going through testing to determine the origin of my disease, and ended up at MD Anderson with Dr. McCutcheon who removed the pituitary tumor transphenoidally.

Miraculously, over the next 9 months, I lost 100 pounds. I am no longer diabetic and did not have high blood pressure until 2008. I continued to lose until my Internal med doc actually told me I needed to put weight back on. By 2008, my pituitary function had pretty much ceased, and I am now on replacement hydrocortison, synthroid and human growth hormone. I turned 50 this year, and I feel very reborn.

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