Monday, July 6, 2009

Shon (Shon), undiagnosed bio

Two months before my 31st birthday, I was diagnosed with diabetes. I was really shocked considering no other family member (maternal or paternal) had this disease.

Well, as the months followed, so did other diseases such as high blood pressure, high cholesterol, etc. Each diagnosis brought more shock because I felt great and could keep up with any 20 year old out there. Within the next two years I had gain 70 pounds and looked like an apple with popsicle sticks for legs. I also seemed to have more symptoms which seemed to be dismissed by the doctors because it was also a symptom of one of my other diseases.

In the past 8 1/2 years, I've had 3 doctors, 3 endocrinologists, a hemotologist, a nuerologist, and 2 cardiologists that just keep attaching my symptoms to one of the labels that has already been given to me. Now, at the age of 40, I feel like I have the body of an 80 y/o. I can hardly walk because of the clots in my legs (have 2 stints), can't stand for long and bending just kills my back because of the crack in my L5 S1 vertebrae, and among other things, can't seem to do anything because of the extreme fatigue I have. I have no doubt that I have diabetes, high blood pressure, high cholesterol, clotting problems with my arteries, and everything else they want to label me with, but it seems to me that after only 8 1/2 years, my health shouldn't have gone down hill so fast. I also take 16 pills a day because each doctor wants to give me a medication for each symptom.

For a few years, I've been searching the internet for an answer. I would spend hours and seem to hit a brick wall each time. Still, I wasn't going to give up. No one gets so sick that quickly from any of the diseases I've been diagnosed with. Just the other day, I was watching Mystery Diagnosis. I don't even remember what it was about, but it did prompt me to start my internet search again. I did something different this time. I didn't research all of my "diseases". I simply typed in the search field: "Do any diseases mimic diabetes". Guess what popped up all over my screen. Yep, Cushing's Disease. I went to article after article and website after website. I was amazed to find that many of my symptoms were linked to Cushing's Disease. I couldn't believe what I was reading. My "diseases" could actually be a symptom of a bigger disease which would explain a lot to me. Now I have another endo which I've made an appointment with (a month away, yuk) and I'm going to ask to be tested specifically for Cushing's Disease.

Below I'll list my symptoms.

Round "Moon" Face, Fat Lump on Back of Neck, Low Potassium, High Cholesterol, High Blood Pressure, High Blood Sugar, Glucose Intolerance, Insulin Resistant, Muscle Weakness, Fatigue, Anxiety, Irritability, Depression, Decreased Fertility, Decreased Libido, Acne-like Rash, Backaches, Excess Facial or Chin Hair, Slow Healing Cuts or Scratches, Large Abdomen, Insomnia, Irregular Periods, Edema, Scalp Hair Loss, Excess Sweating, Memory Problems, Dizziness, Low Growth Hormone.

I also have a chronically high platelet and white blood cell count. The Hematologist couldn't even figure it out (Yes, cancer has been ruled out with a bone marrow biopsy). I'm not sure if that has anything to do with Cushing's or not, but unfortunately I have that as well.

Sometimes we tend to forget that many doctors only spend 7-10 minutes a visit speaking with us and forget about us about 7-10 minutes after leaving the room, and they certainly don't lay awake at night thinking of us. It is much easier for them to treat a symptom that has already been issued a label rather than find a bigger cause for it, so we sometimes have to take matters into our own hands and help ourselves.

I'm thankful to have found this sight. If I find out that I do not have Cushing's, I will continue my search, but it is nice to know that I will find an answer someday.

Email Shon

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Monday, June 22, 2009

Leah (cushiemom4), adrenal bio

Hi I am new here, but have a few questions.

I had cushings for about 4 years before they found out what was wrong with me, I actually was the one that found out, my hubby and I were watching Mystery Diagonis on TLC a woman with the same symptoms...

I told my dr and they did all the tests..long story short, they found out I had a tumor on my Right Adrenal gland, and had to have major surgery with a very long recovery, It will be a year this August 8th...

I was about 205 at surgery and now am 116 so I did pretty well. I am going to be 35 this august....

I have just found out I am pregnant and am very nervous. I have 4 children already am am worried about this pregency..I was wondering if anyone has gone through this and am looking for any advice..

thank you

(MaryO note: Although Leah asks several questions, she didn't give permission for a link to her email address to be added to her bio)

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Sunday, June 21, 2009

Michelle (Michelle), pituitary bio

30 yof who was dx in April of 2009 with Congestive Heart Failure (CHF), one week later Diabetes, and one week later Cushings.

Doc says CHF and diabetes are secondary to Cushings and should go away after sx. Had numerous tests done to locate the tumor with no avail.

Took going to NIH to locate the tumor which is 7 mm and on my pituitary.

Surgery is scheduled for 7-29-09. Suggested to my doctor a few years ago that I had cushings...the weight gain, lack of a monthly cycle, infertility ( they told me I had PCOS after already having a child), etc.

They told me I had been reading too many books and that I did not have Cushings, it was too rare. I would love to see that doctor again after sx with all my records and tell her what a big mistake!!

Never assume anything just because it is "rare". Can't wait to get my life back. The last few years have been awful!

Email Michelle

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Thursday, June 18, 2009

Patricia (Patricia Hallam), adrenal bio

There is a Program on the Discovery Health Network called “Mystery Diagnosis”.

Of the many Conditions featured one thing stands out to me - diagnosis of the various mystery ailments and diseases is often lengthy [ years pass by] – complicated by many variables and extremely frustrating to the patients and their families. What a relief it is for a patient to finally get an accurate diagnosis especially when the patient has been told for years that their complaints may be all in their heads or of their own making. So it has been for me – so many of my symptoms have mimicked other conditions each of them being addressed individually and not really considered to be a result of a bigger or larger problem.

After my right Thyroid gland and the mass on it was removed in the 1980’s I developed weight, cholesterol, blood pressure and energy issues. I found that exercise and diet would not and could not control my weight gain. I was active and watched what I ate but I packed on the pounds and the inches. I considered myself fit but fat. In 1998 when I quit smoking I developed type II Diabetes and put on an additional 50 pounds catapulting me into the morbidly obese category. By the turn of the Century I weighed 209 pounds on a 5’ tall frame [I am now a grand 4’10” tall], My Diabetes was poorly controlled and my body was deformed by the fat. I was a candidate for a heart attack or a stroke and I battled with depression and frustration.

I joined an internet Diabetes support group to learn about how to deal with the Diabetes and purposed to focus on improving my health. One day a group member bid the group fairwell because she had had Gastric Bypass surgery and she was no longer a diabetic. This surprised me as I had been told there was no cure for Diabetes and here she was claiming a cure. Being a natural research nut I immediately began to research the surgery and found that not only does it CURE DM II it also cures a host of other medical issues such as Asthma [to which I was prone], fatty liver, high cholesterol, and high blood pressure. All things I was living with. I found an excellent Bariatric surgeon and on October 1st 2002 he performed a form of gastric bypass surgery called a Biliary Pancreatic Diversion with Duodenal Diversion or BPD/ DS for short that allowed me to retain a functioning but smaller stomach and I was soon on the road to a smaller healthier me. My Diabetes disappeared, and I no longer had any of my former problems with the exception of the high blood pressure that remained an issue. All the medications I had been on were now discontinued but the blood pressure meds were still needed.

By 2006 I reached a weight level that was perfect for me. I went from a size 26 or 3X to a slim 8/10 and I felt and looked better than I had for many years. Life was good and God had given me a second chance to live a healthy life and enjoy His creation. In 2006 I had an incisional hernia repair and in the aftermath of that surgery I entered into a period of unusual symptoms of bloating and weight gain. Unusual because I never changed my eating habits and I seemed to be returning to that fit but fat condition. My surgeon who monitored my post op condition every 6 months ran a battery of tests and sent me for a CT scan. That test revealed that I had a mass on my right adrenal gland. He sent me to see an Endocrinologist who initially decided to watch and see what developed. Over the past year we watched and discovered that the mass, aka an adrenal adenoma had grown, and my symptoms were increasing as was my weight and size.

On Tuesday June 16th 2009 I was officially diagnosed as having CUSHINGS SYNDROME. A rare condition with less than 5 people out of a million being diagnosed with it. Cushings caused by Adrenal Adenomas are ever rarer since the majority of Cushings Patients suffer from Pituitary tumors. I am now scheduled to see an excellent Laprascopic Surgeon at the Lehigh Valley Hospital and God willing he will be able to remove the damaged adrenal gland with tumor and I should be well on the road to a reversal of symptoms and a return to good health by the time our expected grand baby arrives in late August.

The Endocrinologist explained to Hank and I that this tumor has caused my right adrenal gland to pump high levels of cortisol into my system effectively shutting down the pituitary gland and wreaking havoc on my body. Once the tumor and gland are removed the Pituitary needs to “wake up” and resume control of my hormone output and encourage my remaining adrenal gland to take over the cortisol regulation. In the meantime I will be on artificial hormones or steroids. It can take from 6 months to a year for things to return to normal.

That is my story so far but I am extremely happy to know what has been happening to me and to know that this is reversible.

Email Patricia

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Friday, June 12, 2009

Lianne (Kiwilady), undiagnosed bio

Not yet diagnosed but have high blood pressure, am pre-diabetic, and have (under or over - cannot quite remember which) active thyroid. These all diagnosed late last year.

Have been putting on weight for past 18 months or so, increasingly over past 6 months. (Went from 126kg. three days ago to over 130kg.'s today --- impossible to say what it is exactly today (13 June 2009) as my scale only goes up to 130kg.'s).

I have been seeing a Gastroenterologist due to 'tummy problems' for some months. He rescribed Creon which I take with every meal. This is because he believes I have malabsorbtion. An MRI MRCP (Pancreas + ducts) done recently was negative and am due to have a Hepotobiliary Scan (IDA) in a few weeks time. He also referred me to an Endocronologist who has found the following:

"Moon face"
"Buffalo hump"
Inexplicable weight gain with supraclavicular fat
Reddish stiae in lower abdomen
Bruise easily
Significant proximal weakness
Increased pigment on left side of neck and upper back (the latter has mysteriously disappeared but I have photographs to prove it was there)
Low energy levels (this is actually extreme fatigue)
Increased frequency of urination.

The first 24 hour cortisol test was slightly elevated at 304 nmol/24 hours. My second test - read about 2 weeks ago - was "within normal range" according to my GP (exact figure not yet known).

I am not using any blood pressure lowering medication as yet and am due to consult my GP again about this issue next week sometime (appointment not yet made).

I use Gabapentin (3 x 300 mg's x 3 daily) and Tramadol (150 mg's x 2 daily + 50mg's x 1 daily) for residual low back pain (post 2 x discectomy surgeries at L5/S1 level). I also take Prozac (2 x daily) for PTSD.

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Sunday, May 10, 2009

Angie (dermpat), undiagnosed bio

Hi to all

I've been lurking on the boards and Cushings-Help website for just over 12 months now and decided it was about time to introduce myself.

My hometown is Melbourne Australia, but currently I'm living in Port Moresby, Papua New Guinea with my husband and two sons (8 and 11). It's a beautiful place to live, but the healthcare system is not so fantastic.

I became interested in cushings when, within the space of 2 days, 2 different doctors in Melbourne mentioned it to me as a possible cause of my health problems. My blood pressure, which had been well controlled, had gone haywire; as had my diabetes which I'd been able to well control with just diet and exercise. I managed to put on about 15kgs in 1 month without doing anything different and was having problems with concentration, mood, muscle aches, fatigue, bruising etc..... needless to say I look like the cushings images although that wasn't always the case.

In late May 2008 I was asked to do the 24 hour UFC, but wasn't told to refrigerate my sample - and I ran out of room in the container and had to put the last collection in a soda water bottle (as advised by the pathology lab at 5.30 in the morning). I was told that the test results were within normal limits - but now question the validity of the results.

In December 2008 I visited an endocrinologist who agreed to test for cyclic cushings, stating that the UFC wasn't a great diagnostic test. He changed my diabetes medication from metformin to glicazide (due to bowel problems) and ordered the 1mg overnight dexamethasone test (stating that this was the best test to indicate the presence of cushings). Apparently I suppressed, but once again, I'm not sure of my exact result. On my follow-up visit in March 2009, there was no further mention of cushings and he decided that the metformin had not been causing my bowel problems and switched my medication back again.

Naturally, I'm getting frustrated (as is my husband). I'm doing everything the doctors tell me to do and don't see or feel any improvement ... but I'm not going to give in!

Thanks to all those who have posted before me - without your stories I wouldn't have had the strength or confidence to post myself!

Email Angie

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Wednesday, April 29, 2009

Aly, adrenal bio

I am newly diagnosed as having Cushings synndrome. They found a 3 cm tumor on my adrenal gland. I am 28 years old Type 1 diabetic of 18 years (extrememly controlled) and a brand new mom!!

I had a beautiful baby girl in January which I feel forever blessed. Other than being diabetic I have never been sick and have always been the picture of health.

I think this may have started about 2 years ago when I noticed I was getting acne for the first time and my hair was starting to curl and change texture. Did not think much of it but in hind site I feel this was the beginning of my journey.

As of right now I have the lovely moon face, swollen back and collar bone, horrible stretch marks on my belly, and back and knee pain. Not to mention the light peach fuzz that has grown on my face and upper arms:) Lovely:) I have not gained weight for some reason but my belly does look swollen.

The depression is really effecting me because I really want to focus on my baby right now not all of this.

I meet with my surgeon on Friday to schedule the adrenal removal and wonder if once this is done I will go back to normal? I know adrenal tumors are rare and would love to hear success stories. How long do the physical and mental symptoms take to go away? Also do most people end up on hormone replacement the rest of their lives or does your other adrenal gland kick in?

Unfortunately my endo is busy and I will not even be speaking with her until after my consultation with the the surgeon any answers you have would be greatly appreciated!!!

I would love to hear success stories but it seems all of the stories I have read have been really negative. Has anyone felt truly cured after an adrenal surgery?

(MaryO note: Although Aly asks several questions, she didn't give permission for a link to her email address to be added to her bio)

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Monday, March 16, 2009

Christina (happygirl), pituitary bio

Health History

October 1960 Born 1-month prematurely, little pre-natal care (I'm adopted)

Early Childhood - German measles, mumps, whooping cough, croup, ringworm of scalp

7th – 8th year Pneumonia several times, developed asthma, hay fever

10 years - Onset of menses

14 years - Chicken Pox

17 years - Pneumonia, onset of depression (not diagnosed)

19 years - Started getting migraine headaches

21 years - First child born, son, toxemia

23 years - Birth of daughter, mastitis, endometritis

26 years - Miscarriage; notice bruise easily

27 years - Pregnancy, gall bladder disease, removed during 7th month of pregnancy due to pancreatitis; second daughter born in October

28 years - Severe asthma attack, hospitalized

29 years - Birth of third daughter; onset of anxiety and panic attacks. Skin tags appear, severe fatigue and body aches begin

33 years - Hysterectomy due to excessive periods, enlarged uterus

38 years - Severe depressive episode due to divorce

43 years - Bunionectomy; broken toe; wounds heal slowly

44 years - Increase in fatigue, memory / concentration loss, muscle weakness, night sweats

46 years - Right lateral epicondylitis release, major weight gain, severe water retention

46 -48 years- Onset of hypothyroidism, Hasihmotos disease, sleep apnea
Type II diabetes, hypercholesterolemia, gastric reflux, insomnia, Cushing's disease

March 2009 - age 48 - Diagnosis of Cushings disease, pitutitary source by Dr. F. I have plenty of high salivary cortisols, need one high in urine or blood and then Dr. F. will clear me for surgery

Email Christina

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Wednesday, February 18, 2009

Shawna (cushings in colorado), adrenal bio

I am 49 years old.

For years and years, I had high blood pressure, extreme excess belly fat, excessive weight gain. I am 5 ft 3 inches, and kept gaining weight up to over 220 lbs. . . and I ate healthy and exerised.

I changed doctors and even though tests came back normal, she sent me to a cardiologist. He did a cat scan and by accident found a tumor on my adrenal gland.

I was diagnosed with cushings syndrome and type2 diabetes.The tumor was pushing on the adrenal gland and pushing out too much cortesol into my system.

July 19, 2007 I had Robotic surgery to remove my adrenal gland. I lost 80 lbs in 5 months.

There is hope and I am one of the lucky ones who came out of it pretty good!

Email Shawna

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Tuesday, December 2, 2008

Darla, pituitary bio

We moved back to Las Vegas after a 5 year absence in the midwest in early November 2006. I was pregnant at the time.

In late December 2006, the night before New Years' Eve I started feeling different. I can't really describe it other than I felt like maybe I was going to have a stroke.

I went to the ER at Mountain View hospital because we were staying with my husband's Mom in North Las Vegas at the time. The ER did an EKG and CT scan and Ultrasound. My EKG was fine. The CT scan showed "Some sort of remnant on (my) right frontal lobe". The ultrasound showed that at 4 months my baby had not been growing for a few weeks and had no movement and no heartbeat.

The ER Dr. said he was going to call in a OB/GYN surgeon to remove the baby by D&C (Dilation and Curettage) which is a medical term for abortion. He was also going to refer me for an MRI to find out what appeared on the CT scan. I was transfered to the Maternity floor.

We were shocked and devastated and surrounded by pregnant women and women who had just given birth to their live babies while ours is being referred as medical waste. I never saw the ER Dr. again and was never given a referral for that MRI. I even called them after the surgery and asked about the MRI and they refused to look into they also did not give me any contact information for the Dr. who did the surgery, I had no one to follow up with.

Mid-late January of 2007 I went to the bathroom cramping one morning but I only had to pee and when I wiped it was scratchy like an eggshell. I looked at the toilet paper to find a bloody mass of boney tissue and I freaked out. I had to wake my husband up embarrassed and show him, their was no way at that moment I could describe it, it was a horrible feeling!

I put the stuff in a baggie and John (my husband) took me to ER at St. Rose Sienna and we explained what happened. The Dr. at Mtn. View didn't do a very thorough job with the D&C procedure and I was miscarrying what was left of my chopped up baby. It still makes me cry and angers me!

So St. Rose referred me to an OB/GYN contracted with their hospital and tested the "specimen" I brought them. They confirmed it pieces of our baby as I had thought. They referred us to make an appointment with Sara Stephenson in Green Valley. At first, she refused to see me because I didn't know the Dr. who did the D&C, she didn't want to deal with someone else's patient.

St. Rose threatened her that if she didn't see me she was breaking her contract with them and so she did another D&C in late January 2007 at Boulder City Hospital. In May 2007 I tested positive with a home pregnancy test!

I kept trying to get Sara Stephenson to take me as a patient but I didn't have cash or insurance at the time (we were waiting for Medicaid approval) and she refused to see me. I didn't get to see a Dr. until October when we finally had coverage. The only Dr. that would accept me as a patient that far into the pregnancy was Rebecca Tyre in Green Valley (Great OB/GYN!).

At my second appointment I had gained too much weight, I had too much Protein in my urine and my urine was showing sugar too. This meant I likely had Diabetes, possibly only Gestational Diabetes, and was developing Toxemia (the new term for pre-eclampsia).

She referred me to a group called Desert Perinatal Associates who deal with high-risk pregnancies. After only a few appointments (every 3 days) they admitted me into Summerlin Hospital November 4th, 2007 (I think) with the diagnosis of Toxemia and Gestational Diabetes. I was on bed-rest and monitors for my baby.

No one had any idea about Cushing's Disease taking over me and the bedrest destroyed me! My body was getting larger while my muscles were getting weaker.

On December 7th, 2007 my baby was delivered via Cesarean Section by Dr. Paul Wilkes and Dr. Alan Bolnick of Desert Perinatal Associates. They were great! Johnny was premature, his due date wasn't until January 27th, 2008 but he was the healthiest preemie they had ever seen in the level III NICU, especially for being a white male (they normally have the weakest prognosis'). We were SO lucky! He did very well in Level III NICU and was moved to Level II NICU within 2 weeks, I think. He did so well there that when they ran out of space he was the only baby they felt could live through a transfer to another hospital so they could make room at Summerlin.

Johnny was transfered to Spring Valley Hospital under our consent which was better for us because it was so much closer! They let us take him home on Christmas Day 2007!

On New Years Eve (one year from the loss of our previous baby), Johnny turned blue in the face. We called 911 but John had aroused him to breathe again before the paramedics came. By the time the ambulance arrived he was fine, but it was still necessary for them to take him to the hospital (that's what they explained to us). Johnny was taken by ambulance to Sunrise Children's Hospital. By this time we felt like we've been to every hospital there is between Johnny and I.

John rode along in the ambulance and I stayed behind with the girls. He was released the next day, John and I stayed with him overnight while they kept him for observation.

Meanwhile, I was not recovering well from the Cesarean surgery. Desert Perinatal Association disagreed with me, they felt I was recovering normally. I knew something wasn't right, so I found a Primary Care Dr.

I went to UMC Primary and met Dr. Lisa Hohl in January of 2008. I told her everything I could think of that was wrong with me, every last symptom; I wanted a diagnosis so badly. She thought I was a nutcase and told me I just have anxiety and probably some depression. She prescribed me Xanax and Prozac and said to come back in two weeks for a follow up. I was devastated again.

I wasn't taken seriously. I must have sounded like a nut rambling off every symptom in the book, if I were a DR I would have thought the same, I guess. I didn't know what to do. I went back to see her in two weeks like she asked hoping for different results. I had gained 14 lbs. (like 1 lb a day!), she was shocked. "How is that possible?" she thought out loud. Me too. We both looked at each other confused, and wondering if someone messed up at the last appointment when weighing me.

Although I had told her at the last appointment that I was experiencing rapid weight gain. I again reminded her about how I never got an MRI after that interesting CT scan and was begging for an MRI referral, but Mtn. View didn't send her any records about the CT scan as requested.

She asked me if I had bad stretch marks during my pregnancy and I said "Yes, really really bad every where!" She asked me to show her and I did. She said "I am going to send you for an MRI, I don't need Mtn. View's records that bad, I think you have Cushing's Disease and that's why you're gaining weight so fast."

I had just read an article about it that same morning in a Valley Health Systems newsletter so I knew what she was talking about and I had even secretly thought the same thing, but didn't want to say it, it's such a rare disease, and I thought I was probably being a hypochondriac and only assuming that because it was the most recent thing I read.

She sent me off with more specific tests and a referral for an MRI. Imaging places won't give you an MRI without a DR's referral, that's why I couldn't get one on my own. The MRI showed that "remnant on my right frontal lobe" too. It was a tumor on my pituitary gland. It was an ACTH producing macroadenoma it was causing all my problems!

I was referred to an Endocrinologist, Dr. Serena Klugh. She referred me to UCLA. I was scheduled to meet a Neurosurgeon at UCLA on April 30, 2008. The tumor had to be removed, it's the only cure for Cushing's Disease. I had to have brain surgery. It was done through my right nostril instead of a craniotomy. It's called an endoscopic intranasal transsphenoidal surgery to remove the pituitary tumor. Cool stuff, not so cool side affects.

In March before my brain surgery, I went to St. Rose Delima ER because I had a bad stomach ache and way too much rectal bleeding. The ER DR there diagnosed me with Pancreatitis on top of Cushing's Disease. He gave me some pain killers and sent me on my way.

April 30 I went to UCLA and met with Dr. Marvin Bergsneider, a Neurosurgeon. He called 911 because I was short of breath and had an ambulance take me across the street to the UCLA ER and I was admitted to the hospital. They did ultrasounds on my legs thinking I had a blood clot, but none were found. My legs were very red and swollen and they later thought I had bilateral (something, I forgot, but it's really rare and more DRs disagree that was a correct diagnosis than do agree with it). They kept me there and prepared my body to withstand the brain surgery.

I was alone, John was working in Lake Havasu City, AZ at the time and we needed the money too bad for him to take time off to be with me. My surgery was on May 2, 2008. I was released May 9th, 2008 (I think).

I never made it to any of my follow up appointments, I don't feel like I could withstand the drive or the ride that far again. It was a miserable ride home. For months after the surgery I could barely move and everyone thought I was dying. I had no energy and tremendous memory lapses.

I've followed up with my Endocrinologist here. I've found a Ear, Nose, Throat DR here to follow up with, Dr. Stephen Seldon. I haven't seen a Neurologist here since, however DR. Bergsneider at UCLA did give me a referral for an MRI back in May, 2008 and his results and my lab-work according to the DRs looks like the tumor is all gone.

I'm on steroids to replace the hormone, but my body is suffering the affects of the disease still. I'm seeing a Cariologist now, Dr. Pero Kumar Kittusamy at Nevada Heart and Vascular Center and he's trying to get a referral to a local Neurologist for me. I've just had problem after problem since we moved back here.

My ENT (ear, nose, throat) DR said if I lived in the midwest again I'd be doing better with my breathing because of the humidity. It's so dry here (Nevada), it's hard to keep my nostrils moist and I get dry mouth really bad which will eventually rot my teeth which I have worked hard all my life to take great care of aside of smoking for a few years of my life (I quit May 14 of 2007).

I've seen a lot of DRs during the last two years, I've also been diagnosed with severe Apnea, Sinus Diseas, Diabetes Type II, Anxiety... With more to come more than likely. This disease is so cripling and my biggest hurdle is that my pain is being completely ignored and unmanaged so I suffer the affects this Cushing's Disease has played on my body every day.

I am attempting to seek pain management, but with so few DRs understanding this, they just don't help. They want to know what hurts. What doesn't hurt? Everything hurts and if something does stop hurting, there's always something else. I can get relief. When you tell a DR everything hurts they think you're joking or exaggerating, I am not!? I can't go in complaining about something different to get a pain prescription and run out and go in and complain about something else and go on for the rest of my life like that. I need something that can continue to provide relief without having to explain what hurts that minute, because it's easier to name the few things that don't hurt at that moment but probably will hurt before the conversation is over.

My normal weight before this came about me was 140-150 lbs. I was 301 lbs. before my surgery. I am almost down to about 250 lbs. almost 8 months later. I am not comfortable with my "recovery" right now.

My cortisol levels seem good and last MRI looked good, but I'm having many other serious problems now: Heart palpitations, Apnea, PAIN, vision problems (legally blind without glasses), dental problems, chemical imbalances, etc. I really could go on and on.

They can remove the tumor, they can replace the hormones, but they don't care to stop the suffering and pain. The effects aren't always reversib le. I wish DRs understood this disease better. I look at so many overweight diabetics and wonder if they have Cushing's, but they/their DRs have no clue. I bet Cushing's is more widely spread than it's given credit for.

I wish it Cortisol levels were checked during pregnancy or at least during pregnancy with diabetes or any other high risk. The Toxemia and Cushing's in combination almost killed me and my son both! I'm still not confident I've beaten it. I believe the tumor is gone, I believe the blood tests for Cortisol are improved, but

I know my body is not right, not even close. No one should be in this much pain every day!

Email Darla

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