And It's About Time There Was Some Support For Cushing's!
I've been having troubles since I was in my teens. Out of the blue I gained 30-40 pounds without any changes in my eating or exercize. I got stretchmarks on my thighs, hips and breasts. I could tell something was wrong with my blood sugar, but my doctors wouldn't listen to me. My arms would go numb at night and eventually I had an MRI done, but they said there was nothing wrong with me.
Around this time I was diagnosed as having PCOS (back then they called it Stein-Leventhal Syndrome). By the age of 18, I hadn't started menses until I was 16. I had a large cyst burst and ended up in the Emergency Room.
This was the first time I learned that some doctors don't know much; I was told that the pain I was experiencing was Pelvic Inflammatory Disease and they gave me a shot. How humiliating! I went to see an OBGYN and he said I suffered from Stein-Leventhal Syndrome and told me to lose weight. And then I lost weight. Not because I was told to - there was no reason, really. That lasted a year? And then I gained weight, for no reason I can think of.
Meanwhile I suffered from chronic pneumonia and yeast infections. When I started having severe panic attacks my doctor gave me Buspar. I moved across the country and ended up doing methamphetamine for three years. Miraculously, I lost all of the excess weight and all of my other symptoms went away! When I quit doing meth I IMMEDIATELY gained 40 pounds. I went onto a low carb diet and managed to lose some weight, then opted for a 'secret' maintenance dose of meth and quickly lost the remaining weight in time for my wedding.
After my wedding I stopped, and since I had been told I was infertile I wasn't on birth control, 5 months later we were expecting our first daughter. I gained 90 pounds with no effort at all. During the last 3 months of my pregnancy I 'dieted' - monitoring my caloric intake because my OBGYN kept insisting and berating me for overeating. :( My daughter weighed 9lbs. 4 oz. at birth and when I weaned her I was diagnosed with Type II diabetes.
I could not lose the weight after my pregnancy. I couldn't make myself stick to a low-carb diet and I started having panic attacks again.
I just gave birth to our second daughter 8 months ago. During my pregnancy with her I experienced migraine headaches and vision problems from 15 weeks on. I was on bedrest for 5 months for labile blood pressure, extreme edema and migraines. Despite my diabetic 'diet' I gained 60 pounds, most of it water. All of my doctors told me that my problems would disappear when I delivered, but it wasn't so.
Eight months later I still have migraines, near daily but not as bad as they were during pregnancy. I lost all but 10 of the 60 pounds, but I still have pitting edema, headaches and vision disturbances. I see stars in the shower, I see black spots and I get pulsing vision. My panic attacks and depression were being treated with Zoloft, but after increasing my dose from 50 to 150mg with mild improvements we have switched me to Effexor.
Other symptoms that make me suspect Cushing's:
I asked my neurologist last week if I could possibly have Cushing's. He reassured me, despite that list above, that I couldn't possibly. I really want to rule out the worst case scenario instead of suffering like this for years just to keep begging someone to test me. I made an appointment with my neurologist, it's next week, and I hope to convince him to schedule an MRI. He stated previously that if the headaches persisted he would have one done. I had a CAT scan done the day after my daughter was born, last September, and I'll ask him if there was any sign of a tumor on the films.
I'll update after my appointment next week.
My latest workup took place in Portland at OHSU the week of 7/31 - 8/4/2006. I knew going in that I was in a low, I take cortef already for adrenal insufficiency (secondary Addison's?). But I know that I need to keep pressing on, low or not, as things are getting worse for me. My angina has turned into unstable angina, and it hurts when I am resting or just doing minimal exertion. My eyesight is getting worse, unable to focus - the doubling is still there (I have monocular diplopia). My state disability has run out and I need to get fixed, one way or another. My two young daughters need their mother, a healthy one - not the one that begs them to lay down in bed with her and watch TV. :(
At OHSU they found a 'pars intermedia cyst' inside my pituitary, to go along with the tumor that Cedars-Sinai had previously found on 9/27/05. This time the tumor has a second dimension, it measures 2mm x 3mm and it located in the upper right side of the anterior pituitary near the stalk. There was no measurement given for the 'pars intermedia cyst' - also referred to as a Rathke's Cleft Cyst.
You would think that things would be easy going from this point on, as all literature suggests that symptomatic Rathke's Cleft Cysts need to be removed (drained), but it is looking as though that is not the case. Will this ever end?? The Rathke's Cleft cyst makes sense to me, as it is congenital and forms on the 24th day of gestation in utero. It also explains to me why I have lost my hormones in an opposite pattern than normal for a pituitary tumor. I have read that GH usually drops first, then other hormones like TSH and FSH/LH... in my case GH is the last one holding on, since those cells are frequently found on the exterior of the pituitary gland. That's just a pet theory. ;)
I have also discovered odd pigmentation that fits a genetic pattern of... I don't know what: MEN1? McCune-Albright? Mostly fits Carney Complex, to tell the truth... I need to be sure to rule it out, since most of those are autosomal(sp) dominant conditions and they could affect my two daughters. That one I have to track down to the end. There is no denying that all of the pigmentation in my private area is abnormal, plus mid-face lentigines and some cafe au lait spots.
I'm applying to the NIH, as I fit three protocols for which they have open enrollment going, and if nothing else comes up I am crossing all of my fingers and toes that they will finally cure me. I deserve a normal life at some point (I wish). I've been sick since childhood, or at least since puberty.
In late March I had an IPSS procedure performed at UCLA with Dr. Duckwiler, who is absolutely excellent I must say. The results showed that my tumor responded and was right-sided, who correlates with my MRI's. Both Cedars-Sinai and OHSU dynamic pituitary MRIs show right-sided tumors. OHSU also described a Rathke's Cleft cyst.
Surgery was scheduled with Dr. Jho in Pittsburgh, PA for May 24th, 2007. I flew to Pittsburgh, and my aunt, father & step-mother who all live in Upstate NY, met me there. My pre-surgery appointment went well and we arrived at the hospital for the operation the next morning. I was wheeled to the OR, the specialized Minimally Invasive Brain Suite (I think I got that right, the name of the OR I mean).
During the 6 months prior to surgery I was experiencing crushing fatigue that barely allowed me out of bed for more than an hour or two a day, just standing was a task that made my entire body coat with sweat. I lost vision in my left eye, on top of the double vision I acquired in September of 2005. I was completely unable to read regular print on paper since then. :( My joints and muscles ached and hurt so badly as to think someone had beat me quite regularly. Even the lightest wayward brushing of my skin against anything hurt terribly, would rip my skin open like a knife and would bruise me for weeks. My face was swollen so badly that I was actually scared to catch a glimpse of myself in the mirror sometimes, for not recognizing myself. Pitting edema in my legs would rise past my knees on a regular basis and even my arms & hands would dent in if they rested on anything. But worst of all was the 3 year and 2 month constant headache across my brow. Neverending and impossible to shake. On top of the steady headache I would also get migraines in my left eye, at least 3 or 4 days out of the week. Heaven forbid if I were out after dark and I could no longer drive past sundown. Even as a passenger I couldn't escape the hell that would follow exposure to headlights, or even streetlights, after dark. If I really had to be out I would bring a sleeping mask, one of those that seals off all beams of light, and have to wear it in the car as a passenger. Otherwise I would be left with a headache that would paralyse the left side of my head. My left eye would droop and searing pain all the way down the left side of my head & face. Plus an earache on top of my normal earache. Did I forget to mention that? My left ear was always aching also, but no doctor could ever find anything wrong with it. Both ears rang on a regular basis too.
So... post-op... I still had a headache, but immediately my face started deflating. :) At 7 days post-op my face was at least half the size as it had been the week before. It was amazing to behold. My earaches were history immediately when I woke from surgery. And my heart! Oh my goodness, it was the first thing I recognized when I woke up. It felt like I had a brand new heart installed! It used to be that my heart thumped, sped along, jumped about and did all sorts of antics. I could always, always feel it beating in my chest. When I started to come around in the recovery room my hand flew to my chest over my heart. Was it still beating??? I couldn't even feel it anymore! It was just purrring along, and it has been ever since. :)
Dr. Jho came to my room the next morning and saw me. I was doing so well the night before that I hopped off the gurney at the doorway and went to the bathroom to pee before I was put to bed. (TMI!) I mean, I felt that good after brain surgery! The man is absolutely terrific with what he does. I went to surgery at 2pm, got to a regular room at 10:00pm - they kept me late in the recovery room because my left eye and right eye wouldn't track together, but then started working fine - and the next morning at 10am they discharged me and I walked out of the hospital on my own two feet. :)
I've had absolutely no problems since surgery. My face is back to normal, how nice it is to see ME again after all of these years. When the surgery scabs fell out at 12 days post-op my last bit of headache went away. The first day I woke up without a headache, in years!, I just laid in bed as still as I could be. I stayed still for two hours not daring to move, lol. What if it is a fluke, I thought! Well, it wasn't because the next day I woke up with no headache again. And again I stayed in bed extra long, just enjoying my headache-free time. What a miracle to me. :) :)
I'm not sure what to do with myself now. I've weaned a bit off the steroids, and when I get back to Los Angeles next week, I'll wean some more. Other than that, I'm up. I'm happy. I'm active and I am smiling more than I ever remember.
I am overjoyed at regaining my life.
There can be life after Cushing's.... if you are here and have more testing to do. If you are being told NO by your doctors and you know there is something wrong, don't give up! Don't ever give up. I was told no by some of the best, I am told. And some of the best were wrong about me. I just needed a chance. I asked for one, I worked hard to get one, and here I am. :) You can do it! There were many times I didn't think I could, but I made it. Baby steps, a dear friend used to tell me, just take baby steps. :)
Thank you MaryO, for this wonderful website. Without you, I'd still be lost and alone! Much love to you. :x