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Stephanie (Steph), Undiagnosed Bio

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undiagnosed2

Hi. My name Steph, and this has been a long journey for me so far, and I see a long road ahead. Hopefully their will be a rainbow once all these clouds have melted away.

I just turned 33 years old (this month) and have been dealing with symptoms of Cushing’s since I was a pre-teen without even knowing it. I was diagnosed (or possibly mis-diagnosed) with PCOS when I was about 11. That’s when the irregular (to almost non-existent) menstrual cycles, hirutism (chin, upper lip, upper and lower thighs, fingers, toes, basically everywhere) and weight problems began. I was immediately put on birth control to regulate my periods, which only made my life a living nightmare. They forced on a fake (non-ovulating) period and made my moods a disaster. I went on to be on birth control until from the age of 11 until about 3 years ago when I just couldn’t take it anymore, and took myself off. I’ve been using herbal supplements for menstrual regulalation since then, and feel MUCH better.

Over the years I’ve always felt like there was something “more than PCOS” wrong with me. From the extreme inability to lose weight normally, and the ease to gain it, to the weak legs, vitamen d insuffeciency, high cholesterol, high blood pressure, extreme irritability, now non-existent cycle, shortness of breath (just from walking up 1 flight of stairs), slow healing, hoarse voice, high testosterone, male pattern baldness, blurry vision, EXTREME brain fog etc….. It has been very, very, very tough and emotional over the years. It has taken a toll on my personality, emotions, and those around me….

The way that I found out about cushing’s is rather unique. I was on a popular PCOS message board site called “soul cysters”, and I have always been EXTREMELY self conscience of my round puffy face, and was wondering if it could be a side effect of PCOS. So I searched Puffy face on the message board to see if others on the board had experienced it, and sure enough Cushing’s came up, and a suprising number of women either had both (cushing’s and PCOS) or had been mis-diagnosed, which apparently is very common with cushing’s. it was like a gigantic light bulb went off in my head when I started googling cushings symptoms. All these things that I have been experiencing almost my entire life started coming together. I’m really not crazy!! Everything is possibly related. Im almost 100% sure that this is it!!! I don’t know if this is a good or bad thing, as I see that cushing’s is curable in most cases, but it is also scary, and diagnosing it seems like hell!!

I have began my -already slow- journey to diagnosis. And, the the Dr.’s don’t seem to be all that well informed. However, I am DETERMINED. I am excited at the thought of possibly being able to get my life back through surgery or meds. I went to a well respected Endo in my area, and she is gonna test all of my hormones, including my cortisol level. Though she didn’t seem to be too informed on Cushing’s when I brought it up, along with my “dead ringer” symptoms. I’m going to a pulmonologist on the 29th as suggested by my GP (who also thinks I have cushings, but admits he’s not well informed enough or equipped to diagnose). I’m also going to an OBGYN soon (tried going to one today, and had to walk out because it was such a bad experience). But I am determined to get 2nd, 3rd, and however many opinions are needed until I am satisfied.

Also, on a side note, possibly having cushing’s, along with having PCOS, has made me look at the doctors and the medical profession as a whole in a different light. I feel like if you find a genuinely good doctor who listens, cares, takes you seriously, and is willing to test you without question, and work with you, your levels, and your symptoms, you are blessed!! I have had so many doctors try to push meds down my throat (for their own pockets/greed obviously) when it wasn’t needed or necessary without hesitation or question. And, then when I tell them that the medicine is affecting me adversely, they just tell me to keep taking it! It’s sad and ridiculous. I’ve had to learn to do my own research, know my own body well, and trust my own judgement…..

I will be praying for myself and everyone on this message board who has had to deal with this horrific symptoms over the years.

Updates coming…..

interview

Stephanie was our guest in an interview on BlogTalk Radio  Wednesday, April 29 at 6:00 PM eastern.

The archived interview is available now through iTunes Podcasts (Cushie Chats) or BlogTalkRadio.  While you’re waiting, there are currently 82 other past interviews to listen to!

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Michelle (ingledoo), Cyclic Pituitary Bio

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golden-oldie

 

Dear Cushies, (if I have spelling boo boos please over look them, I don’t have the spelling gene)

I would like to say that I was new on my road to a diagnosis, but I am not. I begain to complain to my Dr’s in my 30’s (I am 3 weeks away from 50th B-day) about my symptoms. I have led a very stressful life from the start. No need to go into details, but it has taken a life time to heal from them. One day (it seemed like over night) I felt extreme weakness in my legs and arms.

I begain to have dizzy spells and began to gain weight for no reason. A very strange fatty hump begain to grow at the base of my neck and my periods began to disappear. I don’t mean I missed them, the just began to become very light and last only one or two days. And I became infertile. Happily I had two children and I was alright with the news.

I started to have high blood pressure (sometimes, it goes up and down for no reason). My Dr. said I must be forgetting my meds. I DO NOT! She (I have two Dr’s same office, one male other female) gave one of what was to be hundreds of eyebrow raises that mean your lying to yourself, if not coming right out and saying it. In the begining I had all my weight bulging around my middle. People used to say “you have such nice legs” (for a fat person).

But after so many years of extreme waekness in legs and arms and not being able to be as active as I used to love to be, fat begain to advance over the rest of my body as well. My Dr’s kept telling me to diet and stay away from sweets. No matter how hard I would tell them that I don’t eat many sweets (I like a goodie now and then, but I never have them around as a rule) they would tell me that I had to be pigging out and I was just in denial. I can’t describe the frustration and helplessness I feel when no one belives what I’m saying.

Finally My male Dr. believed me enough or just wanted me to be quiet about it and sent me to the Endocrinologist. I had to wait for months to get there. I had been looking up my symptoms on line and Cushings came up over and over again. I cried when I read all of my sysmptoms facing me from the screen. I have everyone!

I have lost over half of my hair, mostly on top. I have purple marks on my side, I have blured vision, I have to have my glasses changed every two years and I still can’t see. I bruse easily and I heal very, very slowly. I had a hernia operation and the wound opened up and it took 5 months to close. I have the most embarassing hair on my face, I can grow a full beard, and I have a thick hair line on my belly. I lactated for 15 years after the birth of my son. For no reason. I live with anxiety every day of my life. I have off and on depression. I have tried every class of anti-depressent with bad side effects. I will never use them again. I can’t sleep and I’m so tired. I can’t raise my arms for more than a minute before they literally fall down on their own. My blood sugar is up a tiny bit but as i said, I don’t eat many sweets and there is NO diabetes in my family at all.

At last I found the answer I have been seeking for for years. And now I could have some hope. I went to my first Endo appiontment and told the Dr. that I was at the end of my hope and I was preying for his help. After he examind me and took my history he told me he believed that I had Cushings too. At last someone who believed me, I cried buckets. He ordered a AM Crtisol and a 24 hour urine. And he told me to come back in 3 months! In the mean time the AM cortisol came back to my Dr’s office, NEGATIVE. I was dumbfounded. All I could say to my Dr was, I don’t understand? What about the weakness in my legs and everything? She said, and I still hurt to this day: TOO BAD YOUR LEGS WEREN’T WEAK ON YOUR WAY TO THE FRIDGE! I wanted to die. The one 24 urine came back normal too.

I have lost all hope. Then I remembered that the Endo Dr. said he would find the problem and I still held out some hope for help. When I finally got back to see him he said, I the the test were negative and I don’t have Cushings, good-bye and don’t let the door hit you on the way out. I will be honest here, the thought I had in my head was “I guess I need to die so they can disect my pituitary to find the tumors” an awefull thought huh? But that’s how low and dejected I felt. That was last month and I know something is very wrong with me. I have lost who I am and my ability to be a part of life. I know with all that I am that I have Cushings. It is the only thing that answers every one of my symptoms.

Read about it I have found that many Cushies have gone through what I have, but I have no-one to turn to and no Dr. will believe me after their test prove to THEM that I’m nuts. If anyone knows what I can do, please please help me. I do not have money and can not pay for tests myself. I need a Dr. to refer me in Canada. I’m putting it out there for help.

Thank you all,
Michelle in Richmond BC

Update August 24, 2009

Hello Cushies,

Please disreguard spelling boo boo’s! This site needs spell check!

I felt I needed to up date where I am at this point in my Cushings journey. (Please read my first Bio posting Nov. 19th ’08)

I was in the pit of dispair as to what to due about my health and with no one to turn to, I went into a horrible depression. I had just ended a 20 year marriage that included abuse about my weight. Blame from everyone that my sysmptoms were all my fault and in my head. My grown children were no better. I live in a VERY image focused city and if you are not a size two, there is something wrong with you. Most people look at you as a freak. Fat biggots are everywhere. I wish I was joking, but it’s true.

One morning I woke up and felt I had nothing to loose by making a pain out of myself with my Dr’s or anyone that I thought could help. I came back to Cushing’s Help.com and looked up helpful Dr’s in my area listed on this site. I found two in my city and proceeded to write a 5 page history of the last 20 years of my life and the test that had been done on me (or not done) and 24 symptoms that I have. When they started and where they are up to now. I poured my heart out. I had nothing to loose by sending out this letter on my own but dead air space coming back to me. And I wouldn’t be worse off than I already was. So what the heck.

A couple of months past and I gave up on hearing anything back from these Dr.s, when low and behold, my phone rang when I was walking down the street. There was this Crisp South African accent on the other end saying her was Dr. Tom Elliot. It tool me a few minutes to have my brain put him in the right place and I was shocked that he called! He said he read my letter and he agreed with me that I was not properly tested! I was dumbfounded! He said he was going to leave some tests for me to pick up at his office and if they came back showing anything then he would see me, other wise I wouldn’t hear from him again.

I raced to his office and picked up. Two 24/hour Urines and an order for cortisol suppession blood test and 2 salavery test tubes. This was what I dreamed of. And I was so scared! What if it was true! What if I was really crazy and it was all in my head!

Anyway, I did all the test and took them to the labs myself. Months past. I thought the worst. Till one day I was walking down the street again and there was that crisp accent on the other end again! He said I need you to come in and see me! Some of your tests came back as abnormal!

He added me as a regular patiant and I discovered that it is almost imposible to get in to see this Dr. He doesn’t take new pateints unless he feels that they are a special case! I had hope at last! He gave me a physical and he kept saying yep and there it is and nodding his head. Finally we sat down and he asked me one question. He said: of all your symptoms, what one bothers you the most? I didn’t hesitate and said: the extreem weakness in my legs and all muscles. The painful fatigue. I feel that if I could have my body back, I could have a life again, He looked at me with understanding eyes and said he wanted to do one more salavry test and the he would see me in Oct. to discuss treatment for Cyclic Pituary Cushings! I couldn’t help myself. I started balling my eyes out! I wanted to hug him and bake him cookies. But he just didn’t seem like that kind of guy! He would have seen me sooner, but he was leaving on holidays. Now when I see my GP’s they don’t give me that “look” anymore and can hardly look me in the eye.

Remember all you Cushie out there, never give up! Keep rattling you cage and be heard. Someone somewhere will hear you!

All my best to all,
Michelle G.
Richmond BC

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Dennis O, Pituitary Bio

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pituitary-gland

 

In February 2013 I was diagnosed with Cushing’s disease.

Over the previous 6 years, I have suffered from a variety of problems including Deep Vein Thrombosis and a Pulmonary Embolism, compressed fracture of the spine, torn achilles (right leg), ruptured achilles (left leg), several ulcers in my left leg and one in my right, hypertension, high cholesterol and atrial fibrillation. Lesser injuries included a number of torn hamstrings and groins. Prior to that, I had no significant medical problems.

I also put on 14kg (30 pound) in weight. Up to 1997, I was a little overweight but very fit, taking part in distance running including a half marathon. My training routine lessened and I put on weight. The injuries I was having limited my ability to train.

My legs become very weak and have that ache that you get from working out – something which I have had to discontinue due to the weakness. Climbing stairs in particular was difficult. I have stenosis of the spine which causes sciatica which is very painful. I have lost strength in my arms as well as my legs.

When I was diagnosed with possible Cushings, I had never heard of the disease and of course got busy on the internet and read about the symptoms, causes and cures. I found myself hoping to have the disease which is bizarre given the seriousness of the condition and the havoc it causes on the body. The fact that it is not only curable but most of the problems are reversible offers me a quality of life that I thought I could never have again. (since then it has become apparent only some of the problems are likely to reverse)

I underwent testing to confirm I had Cushing’s syndrome and the particular form I had (turned out to be Cushing’s disease). I had extremely high levels of cortisol and a combination of the cortisol and dexamethasone used for testing sent me into a manic state. I had turns where I couldn’t speak. These lasted for about a minute and I had many of them.

I went by ambulance to hospital by ambulance and was admitted. I remained in hospital for 9 weeks, the first 5 of which I was in a manic state. I can’t remember much about that but from all reports I was a very difficult patient. The medical staff tried a variety of treatments until they finally found one which worked.

While was happening, I had several MRI scans on my pituitary gland which failed to find the tumour.

Since then I have had the MRI’s repeated on two occasional but to no avail. This is a common problem with the disease because the tumour is very small

My spell in hospital weakened me to the stage where I was in a wheelchair. I took on rehabilitation and am now walking unaided, albeit with a limp. The pace I can walk is slow but gradually improving. All in all my health has improved dramatically.’

My doctors have decided that they could not operate on me due to my poor health and the fact that they could not find the tumour. As a temporary measure I am taking ketoconozole to control my cortisol levels. That is working well and I am being to show signs that the symptoms of Cushing’s are reversing (loss of weight and, moon face going and strength returning).  However, my cortisol levels are at the high end of normal and this appears to be limiting the pace of my recovery.

Ketoconozole is not a drug which should be taken for long periods, and we are hoping that the tumour shows in future scans. An added complication is that the original manufacturer has ceased manufacture and I am reliant on a generic I am importing from India.

I have returned to playing golf generally twice a week. I have been attending a specialised gym which works on strengthening my back. The pain is becoming less frequent and less in intensity.

I do suffer from excessive swelling in my legs, particularly the left leg where I had the DVT. My vascular surgeon operated on this to improve blood flow. He believes that the current swelling is due to poor circulation and has prescribed full length stockings to be worn during waking hours. He also recommends a targeted exercise program to improve the blood flow in my leg.

I have recently started working with a physio and this seems to be helping.

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Don S (Don S), Undiagnosed Bio

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My name is Don.  I am 35and I am a career firefighter with 14 years on the job.

10 years ago I was injured badly at a fire and almost immediately noticed a change.  My skin began peeling off and I began gaining weight.

I knew about cortisol and its effect on the body because my mother passed away from Cushings at 46 after years of taking steroids for respiratory problems.  My doctors dismissed my issues as stress following the trauma.  My accident happened in March and by July, I had gained  80lbs.  I was constantly fatigued and developed acne all over my body.

A year or so later, I began having stomach issues.  Nausea and Reflux were with me everyday.   I continued to have high serum cortisol throughout the past 10 years but each time, it suppressed to just below the 1.8 threshold with dexamethasone so my doctors just dismissed it as stress.

In 2012, the dizziness and blurry vision began.  My spine is weak and my joints hurt constantly.  My legs are so skinny and weak, they shake when I stand and my heart races from any exertion.  I managed to continue working until a year ago when I accepted that I was putting myself and others at risk.

For the past year I have been paying guys to work for me in order to keep my job and insurance.  I worked hard for this career and promotions and I will not give it up without a diagnosis and confirmation that I can no longer do the job.

I have a new Endo now and she ordered a Urinary Cortisol.  It came back 4X higher than the upper limit.  She is convinced I have Cushings and it isnt just stress.  I have the following symptoms.  Weight gain of over 100lbs, Long purple stretch marks on my flank, side, and groin, Blurry vision, tachycardia, weak limbs, tremors, anxiety, puffy face, dizziness, stomach issues.

I am hoping after 10years of suffering, I may finally have my answer and that I can begin getting my life back.  I have a wife and 3 year old that really count on me and all I have been doing is letting them down.  Our lives are on hold because we do not know what the future will bring.

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