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Thanks for being a member of Rare Patient Voice, LLC. We have an opportunity for you to take part in a Cushing Syndrome interview (NEON_4470) for Patients. Our project number for this study is NEON_4470. Project Details: Telephone interview Interview is 60-minutes long One Hundred Dollar Reward Looking for Patients diagnosed with Endogenous Cushing Syndrome Things to Note: Patient study only, Caregivers please pass the link along Unique links, please do not pass along for 2nd use Want to share this opportunity? Let us know and we can provide a new link Please use a laptop/computer ONLY. No smartphones or tablets - Preliminary questions are Mobile Friendly! Save this email to reference if you have any questions about the study! If you have any problems, email michael.taylor@rarepatientvoice.com and reference the project number. If you hit reply, you will get an auto do-not-reply email. If you are interested in this study, please click the link below to answer a few questions to see if you qualify. Study Link: Link OR if the Study Hyperlink is not clickable above, please copy/paste this URL below. https://panel.rarepatientvoice.com/newdesign/site/rarepatientvoice/surveystart.php?surveyID=9mth6d868qpc&panelMemberID=trfnbc7mvduh1gseff1h&invite=email Thanks as always for your participation! Please be aware that by entering this information you are not guaranteed that you will be selected to participate. As always, we do not share any of your contact information without your permission. Not Interested in this study? (Click link below so we do not send you any reminders for this study) Study Reminder Opt Out Link: Link We truly appreciate the time you set aside to interact with our company and don’t take it for granted. Receive a $5 gift card for referring others who may want to participate in this or future studies. Invite them to join Rare Patient Voice: https://www.rarepatientvoice.com/sign-up. They, too, receive a gift card. Our Privacy Policy Regards, Michael Taylor Project Manager Rare Patient Voice Helping Patients with Rare Diseases Voice Their Opinions Phone: + 1 609-462-5519 Email: michael.taylor@rarepatientvoice.com Websites: www.rarepatientvoice.com -
Cushing's Podcast Interview Information Scheduled Interviews If you want to be interviewed, please choose "yes" on this form A time will be arranged for your interview. On that day, please call the guest call-in number about 5-10 minutes before the interview is scheduled. You can chat informally with the MaryO before the chat begins. You will hear the BlogTalk lady say "BlogTalkRadio" and there will be some Cushing's theme music followed by your introduction and welcome. The first question will be asked. Talk normally, just like you're on the phone chatting with friends. Archived audio is available through BlogTalkRadio or through iTunes Podcasts This player will play either the last recorded show or, if the show is currently occurring, you can hear the live show. Subscribe to the CushingsHelp podcasts on iTunes Think of our podcast as a radio show on Cushing's. The show consists of many "episodes". You can listen on your computer, or your iPods, completely free of charge. To listen, you will need to "subscribe" to the podcast feed using a "podcatcher" application such as iTunes. After you subscribe, each time you launch iTunes, it will automatically check if new episodes are available and if yes, it will download the most recent episode to your computer for you to hear. Then you can sync your iPod with iTunes to get the show onto your iPod for listening on the go. For help in subscribing to podcasts with iTunes, you can use this tutorial from Apple or if you're iTunes savvy, you can subscribe now! To be interviewed, please be sure to include your name, email address and check the box that says "Would you like to be considered for a phone interview?"
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Doc Karen will be our guest in an interview on BlogTalk Radio Friday December 2 at 11:00 AM eastern. The Call-In number for questions or comments is (323) 642-1665 . The archived interview will be available through iTunes Podcasts (Cushie Chats) or BlogTalkRadio. While you're waiting, there are currently 90 other past interviews to listen to! Karen’s Story Life was good! In fact, life was great! I was married to the love of my life. We had a beautiful little girl. My husband and I had both earned our graduate degrees. I earned my Doctorate in Clinical Psychology and was growing my clinical practice. I loved my work! In October, 2006, my life was turned upside down when I gained 30 pounds in 30 days! I knew this was not normal at all. I sought answers but my doctor kept insisting that I wasn’t eating the right foods, that I wasn’t exercising hard enough, and finally that it was genetic. However, I was always a thin person, I ate pretty healthy foods, and I was pretty active. Red flags became even greater when my physician put me on prescription weight loss drugs and I STILL gained another 30 pounds. I knew my body and I knew something was wrong but I had no one to validate what was going on. In January, 2010, to my surprise, I learned that I was miraculously pregnant with our second daughter. I was so sick during that pregnancy and, again, my doctors couldn’t figure out why. My OBGYN was very supportive, yet so concerned. Her solution was to put me on bed rest. I became so ill that she told me that “my only job was to sit still and wait to have a baby”. I did give birth to a healthy baby girl four weeks early. Little did I know, then, how much of a miracle she was. During the latter part of my pregnancy, while flipping through channels on television, I came across a Cushing’s episode on the health TV show, “Mystery Diagnosis”. http://www.youtube.com/watch?v=CRElhhDq_j4 I knew right away that this diagnosis fit everything I had been experiencing: years of weird and unexplained symptoms, gaining 150 pounds for no reason, an onset of diabetes, high blood pressure, and an overall sense of doom. You see, my friends and family witnessed me go from a vibrant young Clinical Psychologist in practice, to someone whose health deteriorated due to the symptoms of Cushing’s, as I tried for many years to get answers from professionals. As I continued to eat a healthy, 1000 calorie per day diet, engage in exercise with multiple personal trainers, and follow through with referrals to consult with dietitians; I continued to gain weight at a rate of 5 pounds per week and experience rapidly declining health. Finally, after watching that Cushing’s episode of Mystery Diagnosis, I found my answer! Ultimately, I sought the expertise of and treatment from a team of experts at the Seattle Pituitary Center in Seattle, WA. I had brain surgery in Seattle on November 16th, 2011. I want to tell you how I found the people who helped save my life… On June 9, 2011, I went to my first MAGIC conference. I had never heard of them but someone on one of the online support groups told me about it. At that time, I was working but was very, very sick. We suspected at that time that I had been sick for years! My local endocrinologist was far from a Cushing’s expert. After watching the Cushing’s episode of Mystery Diagnosis, I told the same endocrinologist who had misdiagnosed me for years that I had found my answer. He swore that there was “literally no possible way that I had Cushing’s Disease!” He stated that my “hump wasn’t big enough”, “my stretch marks were not purple enough” and that “Cushing’s patients do not have children!” I told him that I was NOT leaving his office until he started testing me. He finally caved in. To his surprise, I was getting abnormal labs back. At that time, there was evidence of a pit tumor but it wasn't showing up on an MRI. So, I had my IPSS scheduled. An IPSS stands for Inferior Petrosal Sinus Sampling. It is done because 60 % of Cushing’s based pituitary tumors are so small that they do not show up on an MRI. Non Cushing’s experts do not know this so they often blow patients off, even after the labs show a high level of ACTH in the brain through blood work. An overproduction of the hormone ACTH from the pituitary communicates to the adrenal glands to overproduce cortisol. Well, the IPSS procedure is where they put catheters up through your groin through your body up into your head to draw samples to basically see which side of your pituitary the extra hormone is coming from, thus indicating where the tumor is. U of C is the only place in IL that does it. So, back to the MAGIC convention; my husband and I went to this conference looking for answers. We were so confused and scared! Everyone, and I mean everyone, welcomed us with opened arms like we were family! There were brilliant presenters there, including an endocrinologist named Dr. William Ludlam. At that time, he was the director at the Seattle Pituitary Center in Seattle, WA. He is a true Cushing’s expert. Since then, he left in January, 2012 to have a significant impact toward the contribution of research of those impacted by Cushing’s Syndrome. His position was taken over by another brilliant endocrinologist, Dr. Frances Broyles. I was scheduled to get an IPSS at U of C on June 28th, 2011 to locate the tumor. Two days after the IPSS, I began having spontaneous blackouts and ended up in the hospital for 6 days. The docs out here had no clue what was happening and I was having between 4-7 blackouts a day! My life was in danger and they were not helping me! We don't know why, but the IPSS triggered something! But, no one wanted to be accountable so they told me the passing out, which I was not doing before, was all in my head being triggered by psychological issues. They did run many tests. But, they were all the wrong tests. I say all the time; it’s like going into Subway and ordering a turkey sandwich and giving them money and getting a tuna sandwich. You would be mad! What if they told you, “We gave you a sandwich!” Even if they were to give you a dozen sandwiches; if it wasn’t turkey, it wouldn’t be the right one. This is how I feel about these tests that they ran and said were all “normal”. The doctors kept telling us that they ran all of these tests so they could cover themselves. Yet, they were not looking at the right things, even though, I (the patient) kept telling them that this was an endocrine issue and had something to do with my tumor! Well, guess how good God is?!!!! You see, Dr. Ludlam had given me his business card at the conference, which took place two weeks prior to the IPSS. I put it away for a while. But, something kept telling me to pull the card out and contact him. I am crying just thinking about it, Lord! So, prior to my IPSS, I wrote Dr. Ludlam an e mail asking him some questions. At that time, he told me to send him ALL of my records including labs. I sent him 80 pages of records that day. He called me back stating that he concurred with all of the evidence that I definitely have Cushing’s Disease from a pituitary source. He asked me what I planned to do and I told him that I was having the IPSS procedure done in a few days at the University of Chicago. He told me once I got my results to contact him. Fast forward, I ended up in the hospital with these blackouts after my IPSS. The doctors, including MY local endocrinologist told me there was no medical evidence for my blackouts. In fact, he told the entire treatment team that he even doubted if I even had a tumor! However, this is the same man who referred me for the IPSS in the first place! I was literally dying and no one was helping me! We reached out to Dr. Ludlam in Seattle and told him of the situation. He told me he knew exactly what was going on. For some reason, there was a change in my brain tumor activity that happened after my IPSS. No one, to this day, has been able to answer the question as to whether the IPSS caused the change in tumor activity. The tumor, for some reason, began shutting itself on and off. When it would shut off, my cortisol would drop and would put me in a state of adrenal insufficiency, causing these blackouts! Dr. Ludlam said as soon as we were discharged, we needed to fly out to Seattle so that he could help me! The hospital discharged me in worse condition then when I came in. I had a blackout an hour after discharge! But get this...The DAY the hospital sent me home saying that I did not have a pit tumor, my IPSS results were waiting for me! EVIDENCE OF TUMOR ON THE LEFT SIDE OF MY PITUITARY GLAND!!! Two days later, Craig and I were on a plane to Seattle. I had never in my life been to Seattle, nor did I ever think I would go. We saw the man that God used to save my life, Dr. William Ludlam, the same man who we had met at the MAGIC conference for the first time one month prior! He put me on a combo of medications that would pull me out of crisis. Within one month, my blackouts had almost completely stopped! Unfortunately, we knew this was a temporary fix! He was treating me to carry me over to surgery. You see, his neurosurgeon, Dr. Marc Mayberg was just as amazing. He is one of the top neurosurgeons in the US! Statistically, he has one of the highest success rates! The problem was that our insurance refused to pay for surgery with an expert outside of IL, stating that I could have surgery anywhere in IL! Most people don’t know that pituitary surgeries are very complicated and need the expertise of a “high volume center” which is where they do at least 50 of these surgeries per year. Dr. Mayberg has performed over 5,000 of these surgeries! By this time, we had learned that we need to fight for the best care! It was what would give me the best chance at life! We thought I would have to wait until January when our insurance would change, to see if I could get the surgery I so desperately needed! I was holding on by a thread! We began appealing our insurance. At the time the MAGIC foundation had an insurance specialist who was allowed to help us fight our insurance. Her name is Melissa Callahan and she took it upon herself to fight for us as our patient advocate. It was a long and hard battle! But...we finally WON!!!! On November 16th, 2011, Dr. Marc Mayberg found that hidden tumor on the left side of my pituitary gland! He removed the tumor along with 50% of my pituitary gland. Recovery was a difficult process. They say that it takes about one full year to recover after pituitary surgery for Cushing’s. I was grateful to be in remission, nonetheless. However, about one year after my brain surgery, the Cushing’s symptoms returned. After seven more months of testing that confirmed a recurrence of the Cushing’s, I was cleared for a more aggressive surgery. This time, I had both of my adrenal glands removed as a last resort. By then, we had learned that I had hyperplasia, which is an explosion of tumor cells in my pituitary. It only takes one active cell to cause Cushing’s. Therefore, I could have potentially had several more brain surgeries and the disease would have kept coming back over and over. As a last resort, my adrenal glands were removed so that no matter how much these cells try to cause my adrenals to produce excessive amounts of cortisol; the glands are not there to receive the message. As a result, I am Adrenally Insufficient for life, which means that my body cannot produce the life sustaining hormone, cortisol, at all. I had my Bilateral Adrenalectomy by world renowned BLA surgeon, Dr. Manfred C., in Wisconsin on August 21st, 2013. I traded Cushing’s Disease for Addison’s Disease, one of the hardest decisions I have ever had to make in my life. However, I knew that I would die with Cushing’s. Recovery from my last surgery was difficult and involved weaning down to a maintenance dose of steroid to replace my cortisol. Now, on a maintenance dose; I still have to take extra cortisol during times of physical or emotional stress to prevent my body from going into shock. I promised a long time ago that I would pay it forward...give back because so much has been given to me. This is why I have committed my life to supporting the Cushing’s community. I post videos on YouTube as a way of increasing awareness. My channel can be found at http://www.YouTube.com/drnkarenthames Additionally, I am working on a Cushing’s documentary. Please like us on Facebook at http://www.facebook.com/Hug.A.Cushie Thank you for taking the time to read my story!
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March 22, 2016 7:00pm Eastern Sharmyn speaks to medical professionals about the spiritual side of pain advocacy for patients with pituitary tumors and hormonal related disorders! She'll share how she turned the darkest part of her life into the best part. Watch out because Sharmyn will also use Tumor Humor to keep the message light and fun. Sharmyn will be be speaking with her good friend Garrett Miller, Rated G Radio. Garrett is fun, smart and to say creative is an understatement. Garrett and Sharmyn will be having a conversation about how she turned being misdiagnosed for seven horrible years with Cushing's disease into one of the best parts of her life. Many of you have heard her talk about Cushing's, but very few people have heard the back story, the personal and raw part of Sharmyn's journey... well join them on March 22, at 7:00pm eastern and you can hear it all and join in also. Use the call in number and let's chat. Sharmyn McGraw joins the show Tuesday to talk about turning Pain into Passion and Passion into Action! Listen live at http://www.blogtalkradio.com/ratedgradio/2016/03/22/sharmyn-mcgraw-turning-pain-into-passion or call 323-657-1493 to ask a question and join in the fun! http://www.youtube.com/watch?v=CRElhhDq_j4
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Fabiana had transsphenoidal surgery (pituitary) July 30th 2004. She had a recurrence after seven years of being Cushing's free. A second pituitary surgery on 10/26/2011 was unsuccessful. Another Golden Oldie, this bio was last updated 9/12/2015 Fabiana will be our guest in an interview on BlogTalk Radio Wednesday, October 21 at 6:00 PM eastern. The Call-In number for questions or comments is (657) 383-0416. The archived interview will be available after 7:00 PM Eastern through iTunes Podcasts (Cushie Chats) or BlogTalkRadio. While you're waiting, there are currently 88 other past interviews to listen to! ~~~ Well it has taken me a year to write this bio...and just to give some hope to those of you just going thru this process...I have to say that after surgery I have not felt better! I am back to who i always knew I was....the depression and anxiety is gone and I am living life like a 24 year old should! I guess it all started when i was sixteen (hindsight is 20-20 i guess). My periods stopped i was tired all the time and the depression started. We all kind of just chalked it up to being sixteen. But my mom insisted something was not right. we talked with my gyno...who said nothing was wrong, I had a fungus on my head (my hair was getting really thin) and sometimes girls who had normal periods (in my case three years of normal periods) just go awry. My mom wasnt hearing that and demanded a script for an endo. I went....he did blood work...and metioned cushings. But nothing came back definitive...so they put me on birthcontol and gave me some hormones and the chushings was never mentioned again because that all seemed to work. As time went on my depression got worse, the shape of my body started to change-my face and stomach was the most noticeable- and my energy level kept going down. I kept going back to the doctors asking to be tested for mono..or something. I went to a psycologist....but i knew there was no reason for my depression. Two of them told me "i had very good insight" and that I didnt need them. I started getting more anxiety..especially about going out socially. High school ended and my typical optimistic personality started to decline. I put on a good act to my friends but my family was seeing me break down all the time. I went away for college (all the while gaining weight). My sophmore year I had a break down..I called my family crying that i needed help. I couldnt beat my depression. I didnt drink in college because i knew that would mean instant weight gain, i barely went out...i exercised everyday..hard....i joined weight watchers...i stuck with it. I was at 103 lbs....that crept up to 110...that crept up to 117...each time my weight goal would be "ohh if i could just get back to 108..112...115" with each weight gain my original weight goal would get higher and higher. Internally i felt like I was constantly under a black cloud..i knew there was no reason why i shoudl feel this way..i was doing great in school, i had a supportive family, an amazing boyfriend and great friends...why was i depressed? I was becoming emotionally draining to the people closest to me...I would go home a lot on the weekends...i was diagnosed with PMDS....like severe PMS..and was given an antidepresant...i hated it it made me feel like a zombie...i stopped taking it and just made it apoint to work on fighting the depression....and the weight gain. When i was done college i was about 120 lbs. My face was getting rounder and rounder..i was noticing more hair on my face and arms...and a hump between my shoulder blades and the bottom of my neck. My mom saw a tv show about Polycystic ovarian syndrome and felt that maybe that was what was going on with me...i went to my PCP with this and she said it was possible and that i should to talk to my gyno....I am 4'8 and at the time weighing close to 125..i talked to my gyno and she said I was not heavy..that i was just "itailan" ..i told her my periods were getting abnormal again even w/the birthcontrol and that i was so tired all the time and my arms and legs ached. I also told her that i was bruising very easily...and that the weight gain would not stop despite my exercising and following the atikins diet very strickly for over 6 weeks. My boyfriend and I decided to try the diet together..he lost 35 llbs in 6 weeks..i lost NOTHING! I went back to my PCP who ordered an ultra sound of my ovaries.....NOTHING.(i kept thinking i was going crazy and that it was all in my head)....she also decided to do some blood work...and as i was walking out the door she said.."you know what..i am going to give you this 24hr urine test too. Just so that we cover everything". I just kept thinking please let something come back ....please dont let this be all my fault...please dont let this be all in my head.....please dont let me be crazy. When i got the test results back it turned out that the 24hr urine test was the one test i needed to get on the right track to finding what was wrong. My cortisol level was 3x's the normal. I went to an endo...by the time i got to the endocronoligist i was up to 130...i could not work a full day without needing a full day of sleep and my body was aching beyond description. I was crying all the time...in my room...and was becoming more and more of a recluse...i would only hang out with my boyfriend in our houses. I looked my symptoms up on the internet and saw cushings...that was it! I went to the endo and told him..i think it is cushings....he said he had only saw it one other time and that he wanted to do more tests. I got CAT scans, x-rays, MRI's....my adrenals my pituitary my lungs....he did a CRH stimulation test which was getting blood work done every fifteen minutes for 90minutes....it took weeks to get that test scheduled..no one had ever heard of it and therefore did not know how to do it.....finally after 3 months of tests my dr. felt he had enough evidence to diagnos me with cushings disease (tumor on my pituitary) I was diagnosed in March of 2004. By this time i was about 137 lbs i had to work part time (i am an occupational therapist for children..i do home visits....i could not make it thru a whole day) In April i had to change to office work...i could not lift the children and i could barely get up off the floor. I have to say i was one of the lucky people who worked for people who were very supportive and accomidating...my boss was very willing to work with me and willing to hold my job for me. July 30th 2004 i finally had transphenodial surgery to remove my tumor (they went thru my lip and nose because they felt my nose was too small). It is now over 1 year later....i am down to 108 lbs, i have so much energy...no depression....and i dont mind looking at myself in the mirror...i am enjoying my friends and my boyfriend...(who stayed with me thru it all) And my family. I feel healthy mentally, emptionally, and physically. And i just got back into my size 2 jeans!!! It was a crappy time...(as i am sure you all can atest to) but i learned a lot.....most importantly i was bombarded by good wishes and prayers....friends requested masses for me...a nun in brazil prayed for me...people who i never thought i touched their lives...took the time to wish me well...send an email..or call....I got to experience the wonderful loving nature of human beings and i was lucky to be supported by my family (my mom, dad, and two younger brothers) and my boyfriend throughout this entire tough journey. This experience taught me to realize the strength i have as well as to appreciate the good and the bad in life. I was on hydrocortizone for about 8 months...i was lucky that my tumor was in its own little sack so my pituitary gland was not touched. In the end in took about 7 years to diagnose me..i think that if the dr. at 16 would have pursued the cushings idea nothing would have been found because it took so long for my symptoms to really peak...needless to say i love my PCP and my endo ..and that i changed gyno's... I just want to let anyone out there going thru this disease to know..you are not alone....and to take each day is stride...when you need help ask for it....and that this road can lead to a happy ending. God Bless! ps- it is ok to feel bad about what you are going thru...it is a tough thing to endure...and when the docotors tell you there is noting wrong.....follow your gut...and you keep searching for the doctor that will listen... If there is anyone in the philadelphis of south jersey area who needs someone to talk to please feel free to email me... .i will help you out the best i can! Update November 6, 2011 Well- here is an update, after seven years of being Cushings free it has returned. With in those seven years I married my college boyfriend and we now have a son- Nicholas who will be 2 in Decemeber. It has been a blessed and wonderful seven years. However right around when my son was turning 1 I started to notice symptoms again. Increase facial hair, the whole "roundness" of my body, buffalo hump. I decided I was going to work out hard, eat right, and see - I didnt just want to jump to any conclusions. I stuck to it- and nothing.....my hair started thinning again and the acne was coming back and then the missed periods.....so I went to my PCP- told them i needed the 24hr urine and wouldnt you know.....427 cortisol level (on that 0-50 scale)......here we go again. So back to endo- now at Penn Pituitary Center.....it was another journey b/c the tumor wasnt definative on MRI, and it seems to be cycling.....but I was diagnosed with Cushings again- with the option of 2nd pit surgery or BLA.......after some months of trying to make a decision I went with the 50/50 chance of the second pituitary surgery on 10/26/2011. It didnt work- my levels never came down in the hospital and I went home w/ out of range cortisol levels and no need for medication......BLURG......Sooooo on to the next step.....after I recover from this surgery I will most likely have the BLA- with the hopes of not having to deal with Cushings ever again. This time around has been a little more difficult just with being a mom and feeling sick- but I still continue to be amazingly blessed with a supportive family and husband and we are surrounded by love and support and for that I am beyond greatful. I keep all of you in my prayers for relief and health- as I ( we all) know this no easy journey. Many Blessings! Fabiana Update September 12, 2015 So to bring this up to date. My second pituitary surgery in 2011 was unsuccessful. January of 2012 I had both of my adrenal glands removed. Going to adrenal insufficiency was a very difficult transition for me. It took me nearly 2 years before I felt functional. As time went on I felt more human, but I haven't felt healthy since that day. I can and do function, but at a lower expectation of what I used to be capable of....my "new normal". My husband and I decided to try for a second child...my pituitary was damaged from the second surgery and we needed fertility...after 8 months of fertility I got pregnant and we had our second son January of 2015. In April of 2015 we discovered that my ACTH was increasing exponentially. MRI revealed a macroadenoma invading my cavernous sinus. The tumor is sitting on my carotid artery and milimeterrs away from my optic chasim. I was not a candidate for another surgery due to the tumors proximity to.both of those vital structures. So September 1st of this year I started daily radiation treatments. I spent my 34th birthday getting my brain zapped. I am receiving proton beam therapy at the Hospital of the University of Pennsylvania. I am so lucky to live so close to an institute that has some of the rarest treatment options. Again Cushing's is disrupting our life, my husband goes with me every night to radiation while family takes turns watching the kids....I am now on my 18th year of fighting this disease. I never imagined it would get to this point. But here we all are making the best of each day, fighting each day and trying to keep things as "normal" as possible. Blessings to all of you fighting this disease...my new go to saying is" 'effing Cushing's"! For you newbies...Fight, Advocate for yourselves, and find a doc who doesn't dismiss you and hang on to them for dear life. HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | CushieWiki
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It’s hard to say when my exact “journey” began with what we now know is Cushing’s Disease. Both my Mom and my doctor believe I’ve had this for years, when I started having period problems, migraines and unexplained weight gain in high school. I can safely say that I started really noticing/documenting this last round of health issues in the spring of 2007. I can remember my first doctor’s visit regarding the onset of this in spring 2006, but the majority of my health issues really began a year later. I’d always suffered from migraines, but only around my menstrual periods. I took birth control to help with that, and it also helped regulate my periods for the majority of my adolescent and young adult life. In Spring 2007, however, I started experiencing cluster migraines that were debilitating, blinding and just absolutely horrible. I don’t usually have a primary care physician because I’m, for the most part, a really healthy girl. But I started seeing a doctor to pinpoint the cause of the migraine headaches. I had a CT scan which came back negative for any problems. I tried different abortive medications to treat the migraines when I had them (Imitrex) and also preventive medications (Topamax) but nothing helped. I’m not a big fan of popping pills and insisted that I find the cause of the migraines, rather than just masking them with an expensive, non-generic daily pill. I cut back on caffeine, avoided certain trigger foods, changed the lighting in my house and in my office, had my eyes checked and even experimented with different birth control options, since estrogen can be a huge trigger for migraines in women. Those lifestyle changes helped a little, but I was still having them. Read more at My Journey | Living with Cushing's Disease. Rachel will be our guest in an interview on BlogTalk Radio Wednesday, June 3 at 6:00 PM eastern. The Call-In number for questions or comments is (657) 383-0416. The archived interview will be available after 7:00 PM Eastern through iTunes Podcasts (Cushie Chats) or BlogTalkRadio. While you're waiting, there are currently 84 other past interviews to listen to!
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Hello all, I'm Michelle mother of 3 beautiful children, I work part-time, 33yrs young, non-smoker, non-drinker, overall health is good for the most part.....Where do I even begin. I just recently received the diagnosis of cyclic Cushing's. I'm not really sure how long I have actually had Cushing's because I have had a diagnosis of PCOS since I was 17 yrs. old ( I'm now the ripe young age of 33). However looking back through labs with my endocrinologist who I see every 6 months, my ACTH levels have been elevated for a bit over 1 yr. It was not until recently January of 2015- things were going terribly wrong. Starting in January I started to feel genuinely unwell, on a regular basis. I cant really explain all my symptoms there were so many different sensations and feelings that were seemingly different daily. However the red flag was I was having blood pressure spikes from really high, to very low back to back. I never had any blood pressure issues so this was a concern that led me to see a cardiologist. Upon tons of testing the cardio MD felt that something was telling my otherwise very healthy heart to do this and I should see a endocrinologist. (thank goodness for him) I contacted my endo and let him know.... the testing began. I did every test: the midnightcortisol saliva test, dex suppression, 24 hr urine test, CRH stimulation testing. And I did them more than once. Each time it was a different response either, inconclusive, normal high, or high. I was then referred to the head of the Cleveland clinics pituitary department Dr. Kennedy. He said he is having a hard time believing when he looks at me that its Cushing's. However all my labs say it is. I will say I do fit the mold of PCOS to a tee- which symptoms of that do coincide with Cushing's but he still said we have to be sure its Cushing's. To add to the mix I did have a normal MRI as well. Dr. Kennedy started me on a 2 week midnight cortisol saliva test- Upon completion we noted levels of cortisol all over the place, some Normal, normal on high range, high, and really high. He confirmed with all the other tests this is Cushing's. Now we are trying to figure out what is next.... and where is this damn little tumor at. he feels that it is most likely in the pituitary from my test results, but we still are not ruling out else where. He is thinking that the next step would be exploratory neurosurgery or the IPSS. I'm not sure what to think of all this, except I want to hope for the best like everyone- and just be cured!! On a side note during all of this I also had episodes of severe pain in my chest and nausea. I went to see a GI who did an upper endo scope. They found I had eosinpphilic esophagitis. I also have never had any GI problems until now; and they came on suddenly. Im also having pain in my pancreas area- not sure if any of the two are related at all to Cushing's. But once again I was fine until recently with all these issues at once it seems. wish me luck on further testing, treatment, and ultimately a CURE!! Michelle was our guest in an interview on BlogTalk Radio Wednesday, May 13, 2015. The archived interview is available now through iTunes Podcasts (Cushie Chats) or BlogTalkRadio. There are currently 83 other past interviews for your listening pleasure! HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio
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The next interview on BlogTalk Radio will be Wednesday, April 29 at 6:00 PM eastern. The Call-In number for questions or comments is (657) 383-0416. Steph has a bio posted here: http://cushingsbios.com/2015/04/16/stephanie-steph-undiagnosed-bio/ The archived interview will be available after 7:00 PM Eastern through iTunes Podcasts (Cushie Chats) or BlogTalkRadio. While you're waiting, there are currently 82 other past interviews to listen to! In her bio, Steph writes: HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums |Donate | Bios | Add Your Bio 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…..
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From Rebecca's bio at http://cushingsbios.com/2014/05/01/interview-may-14-with-rebecca-d-rebecca-d-pituitary-patient/ Listen live at http://www.blogtalkradio.com/cushingshelp/2014/05/14/rebecca-d-rebecca-d-pituitary-patient If you have questions for our guest, the call-in number is (347) 843-4703 Archives will be available at this same link after the interview and in the Cushie Podcast at http://itunes.apple.com/podcast/cushingshelp-cushie-chats/id350591438
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From Kathy's bio at http://cushingsbios.com/2014/04/25/kathy-c-pituitary-bio/ Kathy will be interviewed May 7, 2014 in BlogTalkRadio. You can listen live and ask questions or download the podcast later.
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Miriam writes in her bio: “I suffered for eight long years with Cushings disease . I had surgery on August 1 , 2012 , I look like a different person , and act like a different person. I would love to share my journy . One that was an emotional roller coaster . It was a long hellish journey .However I would not trade it for anything else in the world. Although I suffered immensly, Cushings has made me who I am today. I have become strong from this disease. Although I suffered many symptoms, the emotional ones were by far the worst. I would love to be interveiwed because I vowed when I was ill to help people when I got better. I want to give people hope .” MaryONote: Miriam will be interviewed on BlogTalkRadio podcasts December 4, 2013 at 6:00pm eastern
