Thursday, October 29, 2009

Tonight 9:00OM ET, Interview with Laura who is testing for Cushing's. Listen live at http://ow.ly/xlqe

Thursday, October 22, 2009

Next Cushing's Help Interview with Laura, October 29, 2009

October 29 at 9:00PM eastern, Interview with Laura (LauraNG)

This interview will take place at 9:00 PM eastern - please note later time!

Laura has been struggling since 2007 with various odd things happening to her body.

In March of 2009 she was diagnosed with Hashimoto's Disease and Hypothyroid.

Her bio contains a long list of symptoms she has and she has been misdiagnosed with Obesity, Diabetes, Kidney stones, Depression, MS, Manic/Depressive, TIA, Anxiety - stress, Not exercising enough, Not eating properly, Abusive relationship (due to bruising).

In responding to the email confirming this interview Laura wrote:

"When I started reading the bio's of people like myself, I started to cry tears of relief that what I may have, is actually ONE real thing. I cannot tell you how happy I was to find your website and I think it is wonderful that so many people who truly understand how frustrating it is to think we are alone, are willing to put themselves out there as beacons of hope for the rest of us. I felt so strongly, that I wanted to add my bio and offer myself for interview. If I can help one person feel a little calmer while they go through this process, I am more than willing. I don't know if I have Cushing's but if I do, it is important to me to reach out to others because the attacks coming from the physical and mental side of this illness, deserve to be exposed and recognized. Even though I am feeling a bit humiliated, reclusive and embarassed because of what it is doing to me."

Read Laura's entire bio at http://www.cushie.info/index.php?option=com_content&view=article&id=413:laura-undiagnosed-bio&catid=32:bios&Itemid=68

You can listen live at http://www.blogtalkradio.com/CushingsHelp The archives are usually up about 30 minutes after the end of the show and in our podcast area of iTunes by Friday.

The Call-In number for questions or comments is (646) 200-0162.

Tuesday, October 20, 2009

8 new Cushing's bios added. dx include 1 pituitary, 1 diagnosed not sure of type, 6 undiagnosed at http://ow.ly/vt3P or http://ow.ly/vt3Q
8 new Cushing's bios added. dx include 1 pituitary, 1 diagnosed not sure of type, 6 undiagnosed at http://ow.ly/vt0D or http://ow.ly/vt1n

Monday, October 19, 2009

Münchausen By Media - what do you think? http://ow.ly/vgEn
Cushing's locations page updated, 9 new people added from England, USA. http://ow.ly/vgop

Thursday, October 15, 2009

<~~ not observant. Your blog was already there! @CatONineTales

Tuesday, October 13, 2009

Another Cushing's Patient has Died :(

I did not know Bonny personally but she was an Australian member of the Cushing's Help message boards who rarely posted. 

She was only 45 at the time of her death October 12, 2009.  I've known far too many Cushies who have died far too young from this disease.

 

Bonnie's Avatar

Bonny wrote July 1, 2009

I was sick with ALL the symptoms (about 30-40) for 5 years. Finally got correctly diagonosed and had my left Adrenal Gland and its tumour removed in June 2007. The recovery was long and hellish. The worst symptom after the operation was 3 months of constant itching literally from my scalp to my heels and every inch of skin in between. I also had pain in every single joint of my body, along with all the pre op symptoms that took a long long time to improve.

Now two and a half years on, I have a second tumour... on the same side! No idea how that can be seeing as the gland is gone. My Endo is overseas so until he comes back I don't know much, but they are running more tests and I am waiting for a surgery date to go through it all over again!

All the symptoms are horrible, but last time I particularly hated the fractures (still have a few of those),as they made life so difficutlt and painful, but also relly hated losing half my hair, and the weight gain and moon face. Feeling awful is terrible, but when you add the things that make you look horrible too, its pretty hard to take.

As a single parent, (divorced), life is very hard with Cushings as you don't have anyone else to do the things for you that you cant do yourself, or help you with your own personal stuff.

bonny_hamm

Before and after Cushing's pictures.

Rest in peace, Bonny!

 

Beth said it best on Facebook

(I) lost a very strong, courageous friend to the very disease she suffers from.. your pain is gone now, Bonny.. Rest well and thank you for touching my life. ♥

Monday, October 12, 2009

New! Discussion/Debate Topics

I've started yet another blog to go with the Cushie Info website.

From time to time, I'll be posting topics for discussion/debate there and your comments are welcome.  On the right side of this blog is a little comment area so you can see the last 5 comments and/or questions.  If by some magic there are a lot of comments, I'll make that more than 5.

Just click on the Jump To link to participate in the debate!  Thanks.

 

Oh, and by the way - the newest blog is here: http://www.cushie.info/blog/

Cushing’s: the worst case scenario

Ami found this older abstract from last year.  Please, if you think you have Cushing's - or any serious disease - advocate for yourself before it's too late.  Over the years, too many Cushies have died. It's time to take charge of your life, the only one you will ever have...

Endocrine Abstracts (2008) 15 S58

Cushing’s: the worst case scenario

Viv Thornton-Jones

Churchill Hospital, Oxford, UK.


We present the case of a 40-year-old female who was referred to our Department in 1993, for further management following the diagnosis of Cushing’s disease. She proceeded to a transsphenoidal adenenomatectomy (TSA) which resulted in a biochemical cure.

In 1998 she presented with recurrence of Cushing’s Disease, which was managed by a 2nd TSA followed by external beam irradiation.

Bilateral adrenalectomy followed a year later, due to the inability to control her disease.

In 2001 she presented with Nelson’s Syndrome managed by a 3rd TSA followed this time with Gamma Knife surgery.

In 2004 she presented with manifestations consistent with recurrence of Nelson’s Syndrome and proceeded to a 4th TSA. Despite the risk of blindness, the patient agreed to a second course of Gamma Knife treatment for the possibility of tumour control.

Over the next 2 years her clinical picture deteriorated, resulting in a right partial ptosis and a sixth nerve palsy.

She was referred to an Oncologist who offered her Chemotherapy, but she refused treatment.

The patient was then in the care of the Palliative Care Team and she died peacefully at home in 2006.


Endocrine Abstracts (2008) 15 S58

From http://www.endocrine-abstracts.org/ea/0015/ea0015S58.htm

Saturday, October 10, 2009

Sam and Jackie Cushing's episode on Mystery Diagnosis now available on amazon only 1.99! http://ow.ly/tKDQ

Friday, October 9, 2009

"Mild" is probably not diagnosable esp with typo! @helpareporter XX is seeking women (non-experts) between 30 & 55 who have Mild Crushing's.

Thursday, October 8, 2009

4 new and updated Cushing's bios added. dx include 1 pituitary, 3 undiagnosed http://ow.ly/tnWb OR http://ping.fm/mv5E0
Cushing's locations page updated, 4 new people added from England, US. http://ow.ly/tnVr

Pituitary Blog Alerts ~ 10/8/2009

Frugal Antics of a Harried Homemaker: 13 Challenges to Having a ...
By Kristen
By the time all of the tests were done, including a tortuous 5 hour blood test, the specialists said his pituitary gland was the size of a pea. The minimum level of growth hormone considered healthy was 10, he was putting out .5. ...
Frugal Antics of a Harried Homemaker - http://wiseanticsoflife.blogspot.com/

 

Miss Diagnosis: Weight Loss
By Hi, I'm Rene
The surgical removal of the pituitary adenoma is performed by a technique called a transsphenoidal operation. The word 'transsphenoidal' describes the path the surgeon follows to reach the pituitary gland. The word comes from 'trans', ...
Miss Diagnosis - http://missdiagnosis-rene.blogspot.com/

 

Repros Reports Androxal Restores Normal Sperm Counts While ...
Secondary hypogonadism is a deficiency state in which the male hormone testosterone goes below the normal range, even in aging men, due to inadequate stimulation of the testes by the pituitary. The study was designed to compare Androxal ...
Drugs.com - Clinical Trials - http://www.drugs.com/clinical_trials.html

Monday, October 5, 2009

Cushing's Blog Alerts

Psychology Today (blog)

The True Cause Of Depression
Psychology Today (blog)
Depression due to an underlying medical disorder like Cushing's disease or hypothyroidism. Endogenous (or chemical) depression to denote depression that ...
See all stories on this topic

 

 

Five days to go until the Great Race! « An adventure in Cushing's ...
By jennnigan
An adventure in Cushing's and stroke. Jen's story. About · Photos: Cushing's · Photos: The stroke · The Cushing's · The Stroke · With thanks · With thanks 2. Posted by: jennnigan | October 5, 2009 ...
An adventure in Cushing's and stroke - http://blog.slight-hiccup.com/

3 new and updated Cushing's bios added. dx include 1 adrenal, 2 undiagnosed
http://ping.fm/LeAXS OR http://ow.ly/sLc4
Cushing's locations page updated, 3 new people added from Canada, Japan, US. http://ow.ly/sKRO

Thursday, October 1, 2009

3 new and updated Cushing's bios added. dx include 1 pituitary, 2 undiagnosed http://ow.ly/saud or http://ow.ly/saux
Cushing's locations page updated, 4 new people added. http://ow.ly/satd