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Nicole, Undiagnosed Bio

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My name is Nicole, currently 19 years old. I’m a student at The Juilliard School in New York studying Dance. I don’t know why it’s taken me so long to reach out to this community, I have certainly been stalking and researching this disease for months now… I guess I’m ready now to share my own story, especially since I feel more hopeless and alone than ever before.

July 2015— It all started about two years ago. I was only 17 and very much in peak-performance shape. I looked and felt like an athlete training to be a professional ballet dancer. I prided myself for my toned body, which is very very important in the dance world. I think I weighed about 103 lbs at a height of 5’4″.

But that summer I noticed it became increasingly difficult for me to fall sleep at night. I would sometimes stay up until 3 or 4 AM when I knew I had to be up at 6 or 7 AM for a full 8 hour day of dancing. I started to stress eat a lot as well and by the end of summer I blamed myself when I had gained back all the weight I had worked to lose the previous year, plus some. I think I was about 114 lbs by the end of August.

Around this time I also sought out a Naturopathic doctor for the first time at the suggestion from a friend to help me treat an underlying anxiety disorder. I was given supplements, and for a while my health improved considerably. I felt more calm and sane than ever before in my entire life. But that didn’t last long. I continued to steadily gain weight during my senior year, always going on extreme fad diets to try to maintain. Sometimes it worked, sometimes not.

March 2016– By the time Spring rolled around I was really starting to notice a difference in my appearance. My face had begun to swell and I began to wonder if maybe my weight was out of my control. Maybe there was an explanation for my struggles and failed efforts. So I began researching hypothyroidism, since it runs in my family, and I went to my primary care doctor to ask for the first tests. Little did I know this would be the beginning of a long and defeating marathon.

My doctor initially treated me like I was crazy. Saying that if anything I was still underweight and that I should be concerned about my primary amenorrhea (I had still never had a period). But he did the tests and the results came back suggesting hyperthyroidism. I was confused because all my symptoms suggested otherwise. Nevertheless I was shipped off to an endocrinologist who was of little help to me throughout the summer while I continued to dance and went away for a summer intensive in Chicago.

June 2016– While in Chicago my weight just ballooned even more. I admit I did gain muscle but that was thanks to the rigorous amount of training I was doing at the time. I definitely didn’t look right though. My muscles were buried under a layer of fat, no tone was visible, and my puffy face made me look like a stranger to friends when I returned home. I tried various thyroid replacement hormones at low doses, desperate to get my body back.

August 2016– I had returned to my Naturopath in the hopes she could finally diagnose me with hypothyroidism. She did, and in fact she discovered I have Hashimoto’s, which explained the fluctuating levels. She put me on NaturThroid before saying goodbye as I departed for my Freshman year of college at The Juilliard School.

September 2016– My health improved a short while. I lost some of the puffiness on my face, dropped some weight, but settled around 117 lbs. This only lasted about a month.

October 2016– By October things turned for the worst. I felt only weaker the more I pushed myself each day. My muscles weren’t allowing me to dance at the same capacity as I once had, I was embarrassed by my short comings, especially being surrounded by so many talented individuals. My weight started rapidly increasing now. I regained the puffiness around my face and neck, and my weight went from 117 to 126 in a matter of a month.

I was referred to a Reproductive Endocrinologist who thought I had PCOS and put me on metformin. To her credit, I did fit the profile. I complained of rapid weight gain, I had slightly elevated testosterone, and I had a few small cysts on my ovaries. But there were also things that didn’t fit the bill. Like my apparent lack of Estrogen, which is usually elevated in PCOS. And that I had never had a period before. I also showed no signs of pre-diabetes.

January 2017– After winter break I really could no longer put a stop to my weight gain. No matter what, it just went up. I tried cutting carbs, sugar, and calories to below 1,200 a day, all while dancing 6-8 hours a day and my weight only went up.
Metformin didn’t work. Repro. Endo. put me on estrogen and progesterone for a while, but I stopped seeing her eventually because she didn’t listen to me and ignored my qualms about weight.

I also grew very very depressed around this time and began to wonder if this was the end of my dance career. I was starting to look like a joke in classes. I mourned my body. I didn’t recognize myself in the mirror.

May 2017– After months of research I began to wonder if I might have Cushing’s disease. I had the stretch marks on my butt and thighs, the filling in of fat around the collar bone, neck and jawline. Rapid weight gain, fatigue, depression, angry outbursts, and flushed cheeks. I do not have central obesity, but my weight has always tended to go to my butt and thighs. Though for the first time ever I begin to form a muffin top and fat on my arms. Cellulite appeared everywhere when I stretched my skin even a little bit, very odd to see cellulite on your knees! I had swollen legs too.
I now weighed 135+ lbs.

June 2017– When I got home for summer break my mom and I saw Neuro Endocrinologist Dr. Kevin Yuen at Swedish Pituitary Center. He listens to me, the first doctor to really listen! And he began testing.
Four 24/hr urine, 4 midnight salivary cortisol, 1 dexamethasone suppression test, 1 dex-CRH test, 1 Pituitary MRI.

July 2017– (current weight = 147 lbs) After a visit with Dr. Yuen and weeks of speculation he concludes there is only a 50/50 chance I have Cushing’s. Test results are as follows:
-2 mildly elevated 24/hr urines
-2 normal 24/hr urines
-3 elevated midnight salivary cortisols
-1 completely normal midnight salivary cortisol
-normal response (suppressed) after low dose dexamethasone
-normal response to Dex-CRH
-normal MRI

I’m disappointed to say the least that there is not more resounding evidence that I have this disease. I feel so certain that I have it. My body and mind are changing so rapidly I just want to cry every day. It’s so bad I don’t think I can return to school in the fall. I may have to take a year off of dance if I don’t get my body back in shape by the fall. And a year off of training could ruin me!!

Dr. Yuen suggests doing a hospital stay at Swedish to conduct further testing, particularly midnight serum cortisol, to see if more positive results might outweigh the normal results. I guess he wonders if I did something to mess up the cortisol response in some of the tests, though I don’t see how I could have! I’ve barely done anything this summer, definitely nothing exciting. I’m home-bound because I feel so depressed.

I don’t go to ballet classes anymore because it’s too painful to see myself in the mirror and try to dance in a fat suit. None of my clothes fit anymore. I just don’t feel like a young attractive woman like I used to. Not to mention my energy is out the window.

I haven’t quite given up yet! I eat a very limited paleo diet that omits grains and sugar (except those naturally occurring). I try to swim at least every other day and keep up with my pilates and stretching. It’s not the same though.

I might give up if after the hospital stay, the tests come back normal and I’m told I do not have Cushing’s, when I don’t see how it could be anything else!

I just want my life back.

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Rachel, Undiagnosed Bio

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Hello, my name is Rachel, and I am 31, will be 32 in 2 weeks.

I have been suffering from this medical condition, which I believe to be Cushing’s Syndrome, Adrenal Fatigue, or Pheochromocytoma, or maybe a mixture of all 3. I have had this for around 16 years, maybe longer, as I have had the classic “buffalo hump” on the back of my neck since I was 9 years old and have always had trouble with my weight. I have been on many diets since mid-childhood.

When I was around 13, I discovered a weight loss supplement, which I diligently took and lost 20 pounds over a 2-year period. I felt the best I have ever felt my entire life. I eventually had to stop taking it, though, due to not being allowed to bring any meds or supplements to my high school. I was not totally thin, but I looked pretty good. But during that first year of high school, my insomnia returned, and the rest of my symptoms started to emerge.

Autumn 1999 (when I was 14): I started getting daily headaches. Sometimes, they were minor, where I could ignore them, and other times they were so debilitating that I had to miss school. Because I wasn’t allowed to bring medication to school, I had to take Ibuprofen every morning as a preventative.

Autumn 2000: I suddenly gained 20 pounds in one month without changing anything in my diet. The fat was especially much around my face, neck, and torso.

Spring 2001: I developed fatigue, loss of concentration or “spacey-ness”, and being easily physically and mentally drained. I lost contact with many of my neighborhood friends, since I avoided lengthy times spent with them, and sometimes wouldn’t be when them at all because of not having enough energy.

Autumn 2001: Thinking I had hypothyroidism, I had my first doctor’s appointment over these symptoms, especially of the weight gain that was getting worse. Nothing showed up in tests, and the doctor wanted to put me on a 900 calorie diet. I never went back.

Summer 2002: My menstrual cycles became irregular, skipping sometimes 2 or 3 months at a time. Finally, they stopped altogether. I also gained another 20 pounds that upcoming school semester (16 weeks).

Summer 2003: I went to another doctor. She put me on birth control pills to get my menstrual cycles back. It helped a little, but they were very light with severe cramping. I gained an additional 20 pounds from the birth control pills and did not feel good. Once I got off of them, my menstruation stopped again, and I never lost those 20 pounds.

Autumn 2003: I went to another doctor from the University of Chicago. He tested various hormones and found that my androgen levels (mainly testosterone) were so high that it was off the charts. He thought that I might have Polycystic Ovarian Syndrome, so he entered me in several studies he was conducting for people with PCOS. I was given several test medications and had more tests done testing insulin resistance, glucose tolerance, and other things. Nothing came up positive. During that time, I also had an ultrasound done on my ovaries to check for cysts. Nothing showed up. After other tests were done, he concluded that I did not have PCOS, and that I might actually have Cushing’s Syndrome. I couldn’t go back to him, though, as his regular appointments without the studies were really costly. This whole time of the studies lasted till summer of 2004.

I also gained an additional 30 pounds during this time.

>My symptoms of fatigue and loss of concentration continued to worsen, so I had to become a part time student to avoid exhaustion with classes. I felt my worst usually starting around 1 or 2pm, and lasting till around 5pm.

Summer 2005: Diarrhea started abruptly and has been continuing ever since. A year later, I had discovered that caffeine could cause it, so I got off of all caffeine, which alleviated it for a few months. However, it returned shortly after, blossoming into 3 different kinds and becoming worse and more frequent over the years. I used to have it only at night, but now, I have it in the morning as well, and some at night, and sometimes some in the afternoon. I can have even 5 or more bouts of it a day, which makes it difficult for me in any public place. It slows me down in the mornings (as I sometimes have to spend an hour in the restroom) and often makes me late for things.

2006-2010: I have gone to many doctors over this time, each one testing my cortisol, TSH, T3 and T4, testosterone, DHEA, progesterone, and insulin levels, and each one coming up with nothing abnormal except high testosterone.

Spring 2009: I developed a candida skin infection that has been reoccurring since then. Antifungals do not take it away, only antibiotic ointments. However, even the antibiotic ointments do not take it completely away, as it keeps reoccurring and showing discoloration in spots where it had been previously.

Spring 2010: Episodes of light-headedness, shortness of breath, and rapid heart rate started appearing, ranging anywhere from 5 minutes to an hour in duration. They would come completely at random, sometimes 3 or more times a week, and sometimes not for several months.

2011: I developed slow motility, where it takes hours for my meals to digest. This made it hard for me to get to bed at a normal bedtime like 10pm, since I couldn’t lie down without getting horribly nauseous. This also affected my diarrhea, making it where I have to push to make it come out, since my intestines do not contract much to squeeze it out or they contract very slowly.

Summer and Autumn 2011: I went to 2 doctors in New York who also tested my cortisol levels and catecholamine levels to test for pheocromocytoma, which all came out normal. I also had an MRI done on my brain to check for growths on my pituitary gland. Nothing showed up with that, either. I also went to Mayo Clinic in Rochester, MN. My results in those tests also were all normal, and no diagnosis was made.

Spring 2012: My menstruation returned to regular monthly cycles.

Winter/Spring 2013: I suddenly started to become sensitive to cold, so winter became almost unbearable for me. This cold sensitivity has been increasing every year thereafter. Even temperatures in the 60-degree Fahrenheit range make me feel chilled and forced me to dress in double and triple layers of clothing.

Also, around this time, my fatigue reached a new level of severity, making my “dead” time duration between 12pm-6pm.

Spring 2014: My menstrual cycles suddenly changed again, where I had constant menstruation for over 3 months.

2015: My fatigue, again, worsened, making me so tired that I could fall asleep throughout the afternoon and most of the evening. This extreme tiredness would come especially shortly after I would eat a meal, particularly in the midday. This made studying for my classes very difficult and time consuming, since I was so slow.

I also started to notice I could feel a small lump on my upper left side, just below my ribcage. This lump started out the size of a golf ball and has increased to the size of a baseball. It makes me feel nauseous if it’s pressed on with little pressure and hurts when it’s pressed on hard.

My menstrual cycles became irregular again and have stayed that way ever since.

Spring 2016: After getting nowhere with endocrinologists, I went to see a gastroenterologist because of my diarrhea and lump. A CAT scan was done of my abdominal area showing nothing abnormal. In fact, the space where the lump should be in the pictures just shows empty blackness, no organs or growths whatsoever.

Over the course of these years, I have done a lot of my own research and have noticed that my symptoms all match 3 possible conditions: Cushing’s Syndrome, Adrenal Fatigue, and Pheocromocytoma. I am wondering if all these three conditions can coexist in the same body. I know that Cushing’s results from a growth on either the pituitary gland or the adrenal cortex of the adrenal gland, making the adrenal gland produce too much cortisol.

I also know that pheocromocytoma results from a growth on the medulla of the adrenal gland, producing high levels of catecholamines, which, for some reason, does not always show up in a blood test. And I know that adrenal fatigue results when the adrenal glands become exhausted from constantly producing high levels of cortisol during stress that lasts over a long period of time, so they don’t produce enough. So could it be that I have a growth on one of my adrenal glands that extends from the adrenal cortex into the adrenal medulla, causing the symptoms of Cushing’s and pheocromocytoma, while my other adrenal gland has adrenal fatigue? That would make sense why nothing shows up on the tests, because one adrenal gland is producing too much cortisol, and the other is not producing enough. So the two would cancel each other out, yet I could still experience symptoms.

I have gone to 12 doctors over these 16 years, and not a one has ever come up with a diagnosis or even cared about investigating the cause. They resist doing further testing and evaluating, because nothing shows up in the initial blood and urine tests. They don’t even believe me and think that it must be depression or that I am just making it all up. I have been criticized, rebuked, and laughed at by them. I even had a doctor chuckle as he told me, “You better get your periods back or you could get cancer of the uterus”. I have run out of doctors and have basically given up hope.

So where I am right now, spring 2017: My symptoms have gotten so bad that I am almost debilitated. Every day, I always wake up feeling just as tired as I did the night before. No matter how much sleep I get, I do not feel rejuvenated whatsoever. This makes it impossible for me to get up before noon, so often times, I am just eating breakfast/lunch around 3 or 4 o’clock in the afternoon. I have no energy all day long, and the fatigue makes me unable to do much of anything during the times I am awake. Most of the time, I feel like I am moving in slow motion, because time seems to pass by so quickly. I have to take frequent breaks from mental or physical tasks just to regain some strength and energy. I try to avoid social events, as I don’t have the energy to be with people and get easily stressed and drained. So I am alone much of the time. I can only take one class per semester in college now, as I don’t have enough energy to study.

I have acquired muscle weakness in my arms, hands and legs, that makes it incredibly difficult, and sometimes painful, to go up and down stairs, along with doing the process of going from sitting to standing or vise-versa. I appear as “lazy” since I can’t even get up from my chair to get something that is just a few feet away from me. The muscle weakness in my arms and hands makes it difficult to even do handwriting.

My memory if often foggy, also making studying difficult, as I can’t remember what I am reading. Many times, if a friend asks me what I have done during the last few days, I can’t remember. I can experience a fun event, and I still will forget and have to force myself to think about what it was. I feel like in a fog all day.

Almost every day, I will wake up with a headache, or I will get one over the course of the day. I have to take painkillers, such as Alleve, everyday just to keep my headaches under control. And sometimes, my headaches are so bad that they debilitate me. With those kinds of headaches, taking up to 12 Alleve in one day will not take them away.

Painful diarrhea keeps me in the restroom sometimes up to an hour or longer with each bout. I have to eat my evening meal earlier and earlier, so I don’t have to sit up late waiting for it to digest. I even have to keep from lying down for over an hour after drinking just water.

My immune system is also impaired, so I can get sick easily and have reoccurring candida infections. Colds and the flu hit me hard, often debilitating me for weeks. I take vitamin D3 to enhance my immune system to not get sick as often, since I have to ride the train and bus going to and from school. I have also acquired more allergies over these years. My nose has gotten really sensitive to perfumes and fragrances. I never used to be allergic to animals, but now, I can’t even go into a house that has pets without getting a bad sore throat and runny nose for 3 days after. And in general, I have noticed my lungs and nasal passages are producing more mucous, so I have to keep coughing and blowing my nose frequently, or I get a sore throat.

My menstrual cycles are very light and almost non-existent. I haven’t had one since January, and it’s now the beginning of April.

I am now 100 pounds overweight and can’t lose it, even with the same weight loss supplement I took before my first year of high school. The majority of the fat is around my face, neck, and torso, with some now accumulating on my upper arms and upper legs and pale purple stretch marks on my belly and upper arms. I have the typical fat distribution and appearance of Cushing’s Syndrome.

I still get the episodes where I experience a rapid heart rate, light-headedness, and shortness of breath. During those times, I have to breathe harder and just stop whatever I am doing. I have even almost felt like passing out at times.

I will be graduating in 4 weeks and am very afraid, as I don’t know how I will handle the stress and demands of a full time job, especially if I have to interact with people. I have very few friends, and half of my own family doesn’t believe me when I talk about my condition. I feel ugly and boring and have become very depressed. Is there ANYONE IN THE WORLD who will help me??? I hope someone (like a doctor perhaps) will read this bio of mine, and have compassion in their heart and be eager to help me.

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J, Pituitary Bio

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When I began this journey in 1999, I could only find one link for pseudo cushings on Google. I actually gave up finding anyone else like me until today. I was misdiagnosed several times before 2001, when I started seeing Dr. David Schteingart at the University of Michigan (two hours from my home). I was to the point where I was lactating, was growing facial and chest hair, was covered in acne from stem to stern, was passing out, had gained 30 pounds in one month – all around my stomach, was developing a hump on my back, was losing hair, had lost strength, memory, and self-respect, and some days couldn’t even raise my head.

With high cortisol, prolactin, and DHEA I was told I had PCOS even though I have never missed a period in my life. I was then told I had diabetes because I had had a high sugar read when I was pregnant in 1995. I was treated with birth control pills, anti-depressants, and diabetic meds. All of these things made me worse.

Finally, I had an MRI that showed a 2-3 mm mircroadenoma on my pituitary. Two more MRIs confirmed the findings. I was sent off to U of M to their pituitary clinic to find that my pituitary was fine. They sent me to their endocrinology department where I was diagnosed with pseudo cushings. I spent several years traveling to U of M monthly and began taking oral ketoconazole. Yes, that’s right, the same stuff that’s in Nizoral the dandruff shampoo. It took about two years on this stuff for me to develop an allergy. Dr. Steingart told me to choose: relief from cushings or relief from the hives that covered 90 percent of my body. I chose to give up the hives and have not taken ketoconazole since 2004. This is what I have come to realize: I cannot live in a stressful life. If I miss sleep, don’t eat well, or stress out at work, my cortisol sky rockets and I’m back to square one. This makes working almost impossible. My adrenals start off and don’t stop when I’m in a pressure situation. I am like a Southern Belle with the vapors pretty much all of the time. The only difference is: I want to live my life. I want to return to my career and be supermom; my efforts are continually thwarted by my body.

I’m anxious to hear if there are others like me out there in the world and how they have coped and made a go of it.

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imbolcgirl (imbolcgirl), Undiagnosed Bio

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Originally posted Tuesday, December 23, 2008

I’m a 28 yo woman, and had been overweight growing up (Slavic diet!), but was able to take and keep the weight off with a sensible diet and excerise. I had viral meningitis in 2004 and ever since then, everything has gone south.

I gained 80-odd pounds in 14 months with no change in diet, and now several years later can’t stop gaining weight even on very restrictive diet/exercise regimens. I was tested for PCOS but came up with no cysts, am not currently diabetic but hoping to not become one, and tired, punky, and getting really really desperate. I do hit for most symptoms, excepting a prominent buffalo hump. I have worked in medicine (allied, not a dr or nurse) and am almost afriad to present my question of cushing’s to my dr, but I don’t know what else to do! I gain weight on 1400 calories a day, and exercised myself right into a torn-up A/C joint! I’m just so afraid to even ask for the tests because of “med-student’s disease” or being called a hypochondriac. . . and I do NOT want to have bariatric surgery unless I really really need it!

Currently, I am 130 pounds over my pre-meningitis weight, up all night drinking and running to the bathroom, have a seriously huge belly with lovely skinny ankles and wrists, stretch marks on breasts, belly, and underarms, look at me twice and I bruise, have weird temperature issues – my feet are numb, my hands turn blue, but if I go to bed under even one blanket I wake up soaked in sweat. I have a bit of the lovely “extra” hair, and haven’t been interested in the sensual side of life in months.

Things I do NOT hit for: I’m not quite a diabetic using home testing, close but no cigar, and I consistently have LOW blood pressure, usually. I’m on hormones, otherwise I have very long and heavy girly times, rather then short/light/nonexistent.

I see my doc somewhat suddenly tomorrow (I finally got completely frustrated being told to “just eat less” and decided to just ask for the testing.) This is the middle of nowhere, but my doc is not a bad guy by any stretch – but how do I ask without looking crazy? Can meningitis squoosh your pit enough to cause Cushing’s even? AM I just nuts?

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April (April), undiagnosed bio (PCOS)

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Originally posted December 28, 2008

 

My name is April…I am 34 years old and recently started having some issues that led my family Dr. to do some bloodwork. My cortisol levels came back very “very high” according to him, with regular female hormones “slightly out of whack.”

I am so condufused at have no idea where to turn. I found this board and in reading the bio’s it was like reading “my story”. I have felt like I am going crazy and no one understands…including my unsupportive husband.

My history…
2 children…premature (they re 15 & 16 now)
2 miscarriages in past 5 years
hemmoraghed 3 times, hospitalized -D&C
Heavy abnormal periods w/severe back pain
Diagnosed with PCOS 2 years ago after trip to emergency room with what i thought was appendicitis
anemia
Underwieght (5’2…100 lbs) but have “spare tire” around mid section
Have very large Lipoma on shoulder blade near neck
Adult onset acne and boils
RLS
Severe shoulder neck pain
Went to family Dr. recently because I had a 9 day crying jag over something trivial, to the point i couldn’t work!
Dr. prescribed Zoloft and Xanax,for depression,which stopped the crying, but i feel like i may be abusing the xanax.
I feel sad and alone. I just want to stay in my house and hide!
I also have always had anxiety.
My blood pressure has always been low, but Doc has always said that’s normal for person my size.
No sex drive.
Don’t like people touching me.
I smoke, like a frieght train.
I CANNOT SLEEP more than three hours! I can take 15 mg of melatonin and 2 mg xanax and still be up after 3 hours sleep.
I only urinate about 3 times a day which is dark and cloudy and funny smelling. (sorry if TMI)
I am always thirsty!
i could go on and on…

I just want to know if I am crazy or if something is really wrong with me. this is affecting my realtinship with my husband and friends.

my insurance company shanges after January 1st , so i will be making an appt with the surgeon to have the lipoma removed.

Should I see an endocronolgist?
when i talked to my Dr. about my bloodwork, I was so overwhelmed, i didn’t ask any of the right questions.
all I remember him saying is that a norml cortisol range would be 200-300, high 500-600, mine 823.

Does this make sense to anyone?
Thanks for listening!

Any advice would be a god send…
April

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Mandy, Undiagnosed Bio

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golden-oldie

 

Originally from July 19, 2008

AMANDA M JUNE 2008 – INVESTIGATIONS

Hi, This is my document,which I have sent to the doctors, I thought I’d add it as my bio..

FEB 2005 Constipation, Craving for starchy food, Blocked nose right side and change in shape of right side of nose – flattened cartilage.

END OF AUGUST 2005
Large cyst in left side vulva, 2 x two weeks antibiotics wasn’t resolved operation to drain the cyst.

SEPTEMBER 2005
Swelling of stomach after operation, went to doctors thought IBS was given Fibre gel, stomach distended couldn’t go to the toilet for 10 days a lot of pain and a big thick blistering rash at base of spine.

Nurses visited to give enemas wouldn’t work a lot of pain they refused to continue. A&E – X-rayed showed Impacted faeces , given Movicol which worked, told to eat lots of fruit and veg. Did as advised became impacted again.

Ultra sound of ovaries and Stomach – Couldn’t see as fizzing from laxatives.

OCTOBER / NOVEMBER 2005
Doctor referred to Gastro Doctor McStay – Scheduled for Endocopsy – Confirmed Hiatus Hernia

December 2005 / 2006
New Years eve very down and ill with continuous impaction and other symptoms. Friend said to stay at hers and not to stay on my own as it was New Years Eve. Had a few drinks of rum. Early hours of the morning went to bathroom started sweating – collapsed – came to briefly and was on the floor couldn’t control body – friend came in I was having a fit – had cut my mouth and nose. Went A&E new Years day, they said must have been a one off.

January 2006
Sindosopy – Minor inflammation, slow bowel

Follow up Dr. McStay – Advised to take Mil Par for rest of life

February 2006
Symptoms worse very distressed had spoken to PALS previously as felt so ill to wait for appointments and hadn’t been advised what to do next. I had a phone call from a lady at PALS at home she advised me to see A homeopath and said I had Candida from all antibiotics and gave me contact information for a lady to go and see. I Looked up Candida Diet on the internet and started the diet and also went to my doctors at Southchurch Boulevard and asked for an antifungal. He gave me the tablets and I felt really good whilst on them and on the diet but stopped when I didn’t have anymore tablets left.

March 2006
Homeopath (details given to me by PALS) – said I had systemic Candida and low in vitamin’s and took foods out of my diet intolerances and I started being able to go to the toilet a bit better and felt a bit better as month went on. Although always have a swollen stomach, much improved with diet. Also, the ryvita that I was allowed to eat affected my stomach.

Could only eat plain rice, potato, lean meat, Fish. If I ate wrong food I was ill some times I had bad nausea aswell as distension and constipation and other symptoms. If I ate fat I would have nausea and pain in my right back.

I also started getting a lump in my lip which turned into about 10 blisters and the blisters have gone but the lumps is always there and dries out all the time and it sometimes turns into blisters but never goes.

OCTOBER 2006
Homeopath said I should be okay and to introduce foods I did this and became ill. She advised me that I must have an underlying condition, which is why it wont go and said to go back to doctors.

December 2007
I was very low as I thought I was getting better and kept eating foods which made me ill as I was depressed over Christmas. Then I went to a new Doctor at Cluny Square and explained what was happening. He said possibility of Celiac I had blood tests but not biopsy and the diet was pretty much a Celiac diet. The doctor to have me sent back to Gastro and he will try and help me with investigations.

I went back on the diet. I had also applied for a new career at the NHS as a Trainee Radiotherapist previously as I thought I was getting better and I was given the job which started in February 2007.

March 2007
Dr. Mcstay – said I’d been tested for Celiac but not had biopsy agreed to do tests but said I would have to eat for 5 weeks for biopsy as been doing the diet. They said if I had been on the diet that long I may of healed my gut. I was still trying to eat low carb whilst doing the challenge so ate low carb ( I don’t know if maybe I didn’t eat enough in the 5 weeks to do the damage for celiac.

I started the eating gluten also stopped the Birth Control Pill as I felt too ill to go and get my next pack and thought it may help if I had a break. I had previously been off the pill a few years back and didn’t have a period for 1.5 years and just went back on it.

I was signed off work as too ill for the whole 5 weeks. My symptoms were much worse this time during the eating for the test. Also doctor said my thyroid was a bit low.

APRIL / MAY 2007
I returned to work had been back on my diet for a week – My results came through and it tested negative for celiac. I was very stressed as I still didn’t know what was wrong.

I spoke to a dietitn at work and she agreed to try and help – she put me on a anti yeast diet (still eating wheat etc )and said to ask for antifungal from doctor but doctor couldn’t give me a very long course it didn’t make much difference. She then advised me to eat normally maybe I was malnourished from diet and I just got worse and worse and my skin had started changing like it was dehydrated, shrivelled up like crepe paper and thin. I was eating chocolate as was down and was very nauseous after but felt like giving up as was so ill so kept eating wrong foods .

JUNE 2007
I was very ill eating foods that made me ill. Still off the pill. There had been stress at my family my Dad had left. I left work early as stomach hurt and was very nauseous went home and decided to try a antidepressant 20 mg Prozac on the Friday. There was a big row with Parents on the Saturday, I wasn’t really with it as on the tablets. On the Sunday night I woke up with a very bad headache like pressure in my head and nose I felt very strange I don’t know what happened but I wasn’t with it at all.

My face, neck, arm, back of hamstring around my bottom on the right side had changed. I had bad dioreah for a good week may be it was the shock – I lost quite a few pounds very fast as everything went straight through me. My skin Pale, clammy.

On the Monday I saw Dr. Palacian who advised me to stop the tablets I may have had a reaction (HE SAID I COULD STILL BE CELIAC). I became a lot more anxious and depressed following this as I was scared of what had happened and my family were caught up in there problems and didn’t realise what was going on. I couldn’t stand being at home as was getting panic attacks as it happened in my house so I stayed with my Nan. She was very shocked as I was so thin, I had a black mark down my right side of face a rash also on my face which she has a photo of .

JULY 2007
Occupational health referred me to Physiatrist and I explained what had happened. She advised me I didn’t have a mental problem although I was depressed due to what was happening. She advised me to see Endocrine and Dermatology as she said the mark across my face was a sign of autoimmune disease.

I was desperate to get better and back to work so I borrowed money to private to endocrine. I had blood tests and then after was followed up at southend hospital and the specialist said he had spoken to doctor Adey and I was depressed and nothing on the blood tests.

I then requested an Ultra sound as I had read about PCOS and it did show cysts on both ovaries but nothing on the blood tests prior to this.

(Previous doctor) Dr. Adey said I may have lock jaw but no one said anything about my neck or other limb problems.

DR.MARVRA
I decided to pay to go to a Neurologist as I was so desperate and knew Bells Palsy doesn’t affect one side of my body. I did think I had a stroke. Neurologist advised I needed Pituitary MRI, Parathyroid and various other tests. She said my reflexes were absent and told me to stop doing the diet as it may affect the testing but I couldn’t function without this diet. ( I had been eating wheat etc running up to seeing Dr. Marvra)

AUGUST 2007
Nerve Conduction Test – Normal – was on diet

Follow UP SEPTEMBER 2007
Dr. Banister -Neurology

I had to explain again from the start – I had been on the diet again and this time had reflexes. She said probably a bit of bells palsy, didn’t know what was wrong with my neck or limbs on right side. She also to refer me to Charring Cross for Fibromylagia but Doctor Adey wouldn’t refer me. She sent me to a Physio for bells palsy but it didn’t help.

SEPTEMBER 2007
Dermatology – Basildon Hospital I didn’t get to explain anything he quickly examined me and said no cancer and sent me on my way.

OCTOBER 2007
I became very depressed scared suicidal and was admitted to Basildon Hospital for one night and then referred to Taylor Centre. I tried to work with them as I know I am depressed and I am still down but not suicidal now. I was too scared to take antidepressant they wanted me to take as I was previously advised I could have had a reaction to the tablet and didn’t want anything else to happen. I tried the antidepressant Effofor, but it made my anxiety very bad and I was worried about what happened last time so I stopped it.

NOVEMBER 2007
Referred to Gene for PCOS – I was still very emotional as ill, kept eating foods as depressed, and very upset about my face neck and right side as not been diagnosed. I didn’t communicate very well with GYNE because of the state I was in. I asked about Metiformin as I had read this is to do with PCOS but was advised I had to be very fat or want to have a baby. No periods for the last 6 months.

I saw Occupational Health again and was advised to change doctors. I had asked Doctor Adey many times to refer me to chronic fatigue and did receive a letter confirming that he would but he never followed it up. So I decided to change doctors as I was getting worse and was closer to loosing my new job and felt even worse than before.

JANUARY 2008
Dr. Syed agreed to start from scratch and sent me for blood tests which showed high cholesterol. I was much more positive again. I also decided to see a chiropractioner as my neck was hurting all the time cant hold my head up properly and my bottom / leg was flat when I walked and ached with any resistance walking.

Chiropractioner said I had a wry neck, facial drooping, and weakness and said I should have a brain scan and also mentioned Carotid Arteries but he wouldn’t touch me he said something going on may be neurological. He wrote me a letter to take to dr. Syed. It also mentioned having a breast examination as I have implants and the right side has shrunk and aches when I lay on that side.

Dr. Syed referred for all Specialists.

Breast Ultra sound – implant looked fine but change in fat in breast, shrunk on right side and skin droopy.

Neurologist – Referred – back to Dr. Marvra

Dr. Marvra had the letter and it did say I was misdiagnosed with Bells Palsy – I didn’t get to explain anything Dr. Marvra said I don’t need brain scan you have too many symptoms which don’t relate to my department but she said she would send me to a Rheumatologist.

APRIL 2008
I was referred to Dr. Nuduka – Facial Reconstruction Surgeon for Bells Palsy only Specialist in the UK. He said he doesn’t think it was Bells Palsy and mentioned having a EEG but this was not mentioned to Dr. Syed in the letter.

APRIL 2008
Dentist couldn’t perform root canal as couldn’t open my mouth wide enough – x-rayed my jaw and said its in a spasm – sent me to Oral Surgeon

Dr. Sha Oral surgery
He was very nice and asked about my other symptoms. He said it sounds like you have a few things going on, which is why so many symptoms he said he wanted me to have a brain scan and some blood tests.

I was able to tell him every symptom, which I felt stupid telling other consultants. He said I don’t have bells palsy, I have facial, neck and limb weakness and it will get better. He also said I have some TMJ and gave me some 10 mg of Nortipline to help me sleep as my mouth is in shreds from biting gums. He said he will make me a gum shield. He tried to run a tests for (cushings syndrome / possibly food induced) as he said my skin has atrophied and is thin and fragile with bruising along with other relevant symptoms.

Follow up with Dr. Sha – My brain scan showed a cyst in the right side of my sinus in the area of the facial weakness he didn’t think this was the cause of my right sided weakness. Dr. Sha ordered blood tests for Cortisol to investigate Cushing’s Syndrome but the Sythechen test couldn’t be performed as it had to be requested via Endocrine.

Dr. Sha said he needs me to have a second opinion but I must tell the Consultant everything I told him as it was all important.

Rheumatology
This consultant was running an hour late I wasn’t allowed to explain anything. The consultant just said I am a Rheumatologist have you any swollen joints. The consultant couldn’t explain my neck and said about physo but I had tried this and it never has got better. A nurse came in asking about my periods due to results of urine sample but she was told to leave, I never heard anymore about that. I was upset and the reception said its probably as she is running late in her clinic.

Follow Up Oral Surgery
I then had my Follow up in Oral Surgery with a Consultant. My Dad came with me. There was nurses and doctors in and out of the room using the photocopier which was very off putting and I didn’t feel like the consultant had much time as he said to keep it short. He didn’t acknowledge my facial weakness or my neck and he said I am not saying nothing wrong but I don’t know what’s wrong. They didn’t carry out the Cushing Test.

JUNE 2008
I am currently being referred to a specialist in the Parry Romberg Syndrome, which I stumbled across whilst trying to help my self. I wrote to the specialist after contacting the PRS support group. He agreed to see me based on my symptoms and Cathy Rehill at my doctors has organised this referral.

I am struggling with the constant awkward feeling of my neck as it has no strength on the right side, I cant lift anything above my head as it locks into a more rigid spasm and also affects my shoulder.

I am back on the celiac diet as I ant function otherwise due to the many symptoms I get. I am struggling with the diet as I have other intolerances other than the celiac diet, sugar, yeast, dairy, fermented foods. I do have a letter from Mary McStay confirming that you can only have systemic Candida if you have an celiac, or other autoimmune disease and if immune compromised.

I am naturally worried about the diet I am doing as fruit is very important with diet but I then suffer the faecal impaction. I am now also concerned that maybe where I have been on and off the diet it has affected the tests that I have had but I can feel that I am damaging my body further every time I eat the foods that affect me. It is very difficult to stick to such a rigid diet especially when I am struggling to get around some days and have difficulty getting to supermarkets.

I am very upset about the affect this illness has had on my appearance, my skin is so dry dehydrated, loss of skin elasticity, facial drooping, twisted neck, hollow eye, wasting on nose, general loss of muscle tone all over , flattened buttocks, bloating all the time. I am hoping this will improve once I know what’s wrong and when I am treated.

The palms of my hands keep shrivelling up, drying out and going tight and then the skin flakes on and off throughout every day and this is really worrying me also. Along with the pain in the right side of my back. My skin has got so thin that when I rest my elbows on a table for a couple of minutes they really hurt and go bright red and look like I’ve fallen over. I have marks on my arms which are months old from blood tests, spots and cuts that don’t heal.

I also just went back to the ladies clinic for a second biopsy as they found HPV virus last year. They advised me that I still have this infection and normally the body gets rid of it but my immune system must be compromised as its still there. I have got to go back in 6 months for another check up.

When I eat wrong I have also noticed that my body seems to be swollen like I have water retention and my face and eyes are very puffy. I can also feel the weakness / wasting a lot more if I’ve eaten wrong. I have no quality of life, I don’t go anywhere as don’t feel up to it or due to restricted diet and not able to drink alcohol, I cant go to the gym like I did due to the weakness or wasting in my right leg neck and arm. Fatigued and never feel well, I have no libido or sensitivity at all and I still have no period.

My Parents are now being very supportive as they are concerned about my health and recent deterioration, which has given me the strength to try and stay positive that I will get to the bottom of this. I do appreciate the help I have had from doctors and specialists but it is frustrating as I seem to have a complex illness or maybe something rare, which is making this difficult to diagnose. I have been very patient and I have done everything I’ve been advised to do but this has gone on to long and I cant live like this much longer.

Thank you for support and for reading this document. I hope it makes it easier to understand what’s going on and why I am so upset when I visit the doctor.

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Marcia (Marcia K), Undiagnosed Bio

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golden-oldie

 

Hello everyone! I have been diagnosed with PCOS for 15 years. I am 48 years old and have many of the cushing’s symptoms and have had them most of my life. I am on appropriate medicines for PCOS due to research I have done on blogs like this one.

I am here to learn more about Cushing’s as I believe I have this and my appointment with an endo is 6 weeks away and I want to go to this visit with much needed knowledge.

 

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