Comments: Our community speaks

We’ve been combing the PWN website and Facebook news feed in search of interesting comments from our readers and thought we’d share a few. Our readers are our best contributors and their comments provide very interesting perspectives. We learn from sharing, so keep those comments coming! We left names out to protect privacy.  If you’d like us to use your name in future articles, please let us know by message or email and state it’s OK to quote you or use your name.Here are a few:

This is a great story sent as a comment to our Acromegaly and facial recognition article:

I am 27(F) and stumbled upon my acromegaly diagnosis, as many of us do. After addressing “the wrong” symptoms for almost 2 years, it was a birthday selfie with my fiancé and a reminiscent browsing of Facebook that brought my attention to a change in my smile and difference in my bite. I consulted an orthodontist who, after viewing my X-rays, insisted I see an endocrinologist. I was diagnosed on July 26th, 2015 and had transphenoidal surgery at UCSF on Sept 15th, 2015 to remove most of my pituitary tumor. Advances in facial recognition software are rapidly being implemented and improved by social media companies. I can post a photo of myself and 5 friends to Facebook, and in seconds, each individual’s name/profile is automatically associated and linked with their faces for my approval. What if Facebook could tell you “something’s wrong!” What if Facebook could have sent me a notification that I had acromegaly based on the growth of my jaw, the skin-tags on my neck or the massive proportional changes in my hands and feet? Wouldn’t that be something! I hope that advancements in facial recognition software and selfies alike will prove helpful to others in future diagnosis of acromegaly.

 

Dr. Blevins article on “Diabetes Insipidus: A few clinical pearls” generated great involvement and commentary here’s a very interesting story:

Bless you, thank you for taking the time to explain these conditions ( in my case) my 16 yr. Old son has from a craniopharyngioma in 2010. This post reminds me of the time I took him to the ER for a 6-day 24/7 headache in Oct.2012. He got admitted. His DI was well controlled before the visit, after neurology gave him valproic acid and amytriptalyn together, hours later he complained of a sharp pain near the diaphragm and his DI started getting out of control he was urinating every 15- 30mins for hrs.. All they wanted to do is have him drink as he pees supposedly per Endo. They wanted to continue with valproic acid and amitriptalyn the next day, I demanded to not give it to him anymore because it was the culprit for the abdominal pain that was actually pancreatitis and acute renal failure confirm after an ultrasound and blood work. The weird thing was that the headache got better after all that peeing… this is only part of the story…

Currently, he suffers from extreme fatigue, sleeps a five hr. nap after school not much energy to eat, 24/7 headache in the back of head takes imipramine 100mg 1× day to prevent headaches but he lives with a headache, another symptom is strong palpitations (awaken by them one day late july2014) and sometimes high heart rate as high as 160 just sitting down. … doctors at ER think it’s anxiety. He takes 15 mg of cortef spread evenly 3xday. 1 tab.of desmopressin X2 daily. He is rarely thirsty, pees about 4 times a day has a fluid restriction of 3.5 Ltrs. a day he usually drinks 3ltrs. Cardiologist thinks it’s a volemic issue wants him to drink all 3.5 to help with palpitations and “hypotension” symptoms, EKGs have been ok in aug. and sept.2014. Thyroid was increased a month ago from 112mcg to 125 mcg of levothyroxine he also gets75ml of testostorone 2xmonth. Oncology says he needs a sleep study, ENDO says its not hormone related. I will be checking his weight every day & monitor his urine output, we’re trying to keep a diary of headaches and palpitations. Hopefully you can catch something that his doctors can’t. Cruz my son’s name, he is a jr. in high school, wants to become an Pediatric Endocrinologist to help kids feel better and not have to go through what he’s enduring. He’s is an excellent student but is operating on an empty tank, as he describes it.

 

Many people reacted to our friend Rachel Pegler “Molly’s Story” and the subsequent “Expressions of a frustrated parent”. If you haven’t seen it click on the links. Here’s three comments:

Rachel and Molly, I’m sending hugs and prayers from the US. I’m hypopit as well. Undiagnosed for many, many years. I would like to follow Molly’s progress. If you have a Facebook page or website, please post a link. Hugs to you both.

Can you please post a link for the petition so that I can sign it, as well as help spread the word!!! I think you are doing something incredible even though it cannot take all the trials and tribulations you have experienced in you and your families lives, you are changing the world…….one person at a time!!! Thank you!!

My deepest and most tender hugs to Molly and you! I understand the frustration to a point but not 14 years . Granddaughter was diagnosed in NicU but only after 1 month and on the verge of death.

 

This piece was sent as a comment to PWN contributor Linda Rio’s excellent article “I Have a Tumor…So Now What? The Mental and Emotional Side of Pituitary Disorders”

 I have Cushing’s Disease. I had a 9mm Pituitary tumor that pointlessly ripped away everything i loved about my life. My spouse, my career, my confidence, my kindness, my body; it changed the look of my face, in turn i couldn’t recognize myself physically or emotionally. The years if no doctors believing something was detrimentally wrong took a toll on me and my love ones. I began to believe i was crazy and just “letting myself go”. At one point I even wanted to take my life because i couldn’t imagine living the rest of my days in that torture. I finally was saved by a team of medical angels in Edmonton, Canada. My tumor has been removed and I’m 15 months post op. Many of the physical symptoms are gone and my mental state has improved. However, my family us still healing from the trauma and I’m suffering from ptsd and I’m unable to cope with the loss of my former life. I have trust issues with new doctors and high anxiety when I’m ill. My body image is horrendous and i sirens most days in a “positive” facade. I am seeking counseling and even without the difficulties of finding the right therapist, i will not give up. That little tumor and little pituitary can not rob me of a fulfilling life forever. I’m going to make peace on day. Me and my brain are going to find common ground. With the help of great doctors, I’m hopeful.

 

My article on “Talking with Future MD’s” drew a few comments. Here’s my favorite from Dr. Jennifer Beckler PHD science and biology professor at the Joint Medical Program at UC Berkeley/UCSF. This is by far one of my favorite activities for PWN!

It is always a pleasure to host Jorge Faccinetti for our expert speaker series at the Joint Medical Program at UC Berkeley/UCSF. He is a passionate educator on the topic of pituitary diseases, and he can engage any audience, from experienced health professionals to lay persons. He has an extraordinary amount of personal and professional knowledge about acromegaly and shares it readily with others. He has a highly positive approach to life, and an extraordinary ability to connect with people, which makes him extremely inspirational to others. He is a great speaker (and knows at least 4 languages fluently). His vision for Pituitary World News makes him a leader in patient-doctor communication. It is already making a real impact, and can serve as a model for others who wish to use the internet to connect clinicians and patients on important medical topics.

 

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