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First Giving? The Possibility to Make This Cause Known FAR exceed what i do alone...!

What is Firstgiving? from Firstgiving on Vimeo.

`1 in 5 people due to autopsys have pituitary tumors.`

I enjoy wire wrapping beads, pendants, a little of just about anything. Everyone especially seems to enjoy the bookmarks, Actually i enjoy making the pieces used to make jewelry more than a whole piece :). Accent beads, charms, anything someone would like to add to their jewelry yet do not have time to or do not care about learning how to make those extra's, but like to use them with what they make . I sell some here and there & put into making cards to give out so that you will have all the information needed to be Fully Aware of these tumors.

The Truth verses Many well meaning but unqulified in the public and medical community can determine life or death determining any medical attention you may need or get. I know all to well i'm treading on controversal ground, but with what i've experienced concerning medical advice, the 2 years and hundreds of hours of research, flew Twice to a Duke dr. in NC, and have been in 4 states altogether, Please Know, i do Not sit here and rehash this because i enjoy it. Knowledge is power and if One person did Not have to walk down this 7 yr journey as i have but could go right to the correct doctor, rule out these tumors, along With having all endoctrinal issues ruled out or either went to the right doctor with `Knowledge` of this & Open to treatment. "Before" your whole body has been affected; I'll shout it from the rooftops! The truth for me is, If i never had to speak of it again it would be a Joy!

With Any health issue, Please do your own research, do not take anyone's advice until you are satisfied it is correct. (Do not take my advice, search for yourself!) Many people are misdiagnosed, constantly finding themselves in the Psy. unit and on so many meds for Years, yet still wondering why nothing works & still yet changing meds. Think twice friends, I've Been down that road, & thats been over 24 yrs ago. Its a much different game now, beware of Anyone, Dr. Nurse, etc...who says they diagnos you as this or that within the first visit! (the going diagnosis now is Bi-Polar!) I hope you remember that, i know bi-polar when i see it & when i Don't. Be Very aware if you go to an ER for something Other than to admit yourself to a psy. unit and someone trys to get you on their psy. floor!!! This is Not proper protocol, Nor is anything other than a Dr. asking you if you think about hurting yourself or someone else, and do you think you need to stay with us a few days or want to try going home??? This is Without Any feeling of them wanting you to or not. I've got a `chilling` story concerning this during an ER visit in March 2010 with heart palpitations that could have turned deadly had i taken this advice. Its posted in one of my posts below. There's a very good article out about Psy. issues and Medical issues concerning medical problems overlooked as being 'only' psychological. Never take a psy. "Diagnosis" before having your thyroid checked and all endroctrinal issue's. What are your syptoms first? Do a quick search online and see Other medical issues that have the same symptoms.

I'm considering making a First Giving Fundraising Page for the `Pituitary Network Association` as they Are Non Profit. They also have been my main source of information in the past years. They started in 1992. That Really hits home just How Little the public & Medical Field know about these tumors. So many have some very Major health issues including myself even though the drs. and specialist will deny it to the end.

My life has been changed so drastically that i do not remember what `Normal` was like. But, i do have an advantage, God lets Nothing happen concerning myself that is not to bring `GOOD` out of Pain. And for that i am so Very thankful!

Note- I tend to repeat myself Alot now, so please overlook it, many times even re-reading i may not catch something written more than once. Some posts just will not make much sense, and looks like i'm just all over the place from one thought to another then back again. This is just Part of it! :)

To Support The `PITUITARY NETWORK ASSOCIATION` directly please go to their website. http://www.pituitary.org/. this is also where i found the best and most complete info in words understandable to the layperson. with Love and the blessings of God` Cj

Tuesday, September 15, 2009

Pituitary Tumors, How Many Have Suffered For Years Misdiagnosed?

PLEASE TAKE A FEW MINUTES AND MAKE YOURSELF `AWARE` 1 IN 5 PEOPLE HAVE A PITUITARY TUMOR.

 I AM ONE OF THEM.

Note-(1 IN 4 WOMEN HAVE BREAST CANCER.) THESE TUMORS ARE SOMEWHAT A NEW FIELD OF MEDICINE. Or is it Really! I'm not so convinced right now. I'D NEVER HEARD OF THEM BEFORE, BUT THEY ARE NOT TO BE PLAYED AROUND WITH ANYMORE THAN BREAST CANCER. 99.9% OF THEM ARE NON CANCEROUS, BUT COULD THERE BE A LINK BETWEEN THESE TWO??? HARMONES AFFECT EVERY PART OF YOUR BODY.
FOR YEARS PEOPLE SPEND A LIFETIME GOING FROM DOCTOR TO DOCTOR SUFFERING AND EITHER ARE MISDIAGNOSED OR ONLY TO BE SENT TO A PSYCHIATRIST. THEY WILL TELL YOU THERE IS NOTHING WRONG WITH YOU, ITS ALL IN YOUR HEAD. `THAT PART IS RIGHT!` THE TUMORS IN MY HEAD ARE REAL AND CAUSING ALL KINDS OF SYMPTOMS LEAVING ME HOUSEBOUND. BUT NOT FOR LONG. I'VE DONE MY RESEARCH AND WILL BE GETTING TREATMENT WITHIN A COUPLE OF WEEKS. THIS HAS GONE ON FOR 3 YEARS, I'M EXHAUSTED.

IF 1 IN 5 PEOPLE HAVE THESE TUMORS, WHY HAVE WE NEVER HEARD OF THEM? THIS HAS BEEN PROVEN THROUGH AUTOPSYS. DOCTORS `
SUPPOSEDLY`ARE NOT TAUGHT ABOUT THEM FOR THE MOST PART.
I'VE BEEN IN 3 STATES LOOKING FOR THE RIGHT KIND OF HELP. IT LOOKS LIKE DUKE HAS A THUMBS UP ON THIS. THEY DIAGNOSED MY FIRST TUMOR AROUND 2004.
I WILL DO EVERYTHING I CAN POSSIBLY DO TO PASS ON PITUITARY AWARENESS UNTIL THE SILVER RIBBON IS AS MUCH A PART OF AWARENESS FOR THESE TUMORS AS IS THE
PINK RIBBON IS TO BREAST CANCER.
BY READING THIS YOU `MAY` SAVE A LIFE, AND IT COULD BE YOUR OWN!

IF YOU HAVE THYROID PROBLEMS. GET AN MRI!YOU WIL FIND SYMPTOMS AT `THE PITUITARY NETWORK ASSOCIATION` WEBSITE LINK BELOW.
WHAT IF WHEN ONLY A FEW PEOPLE FIRST BECAME AWARE OF BREAST CANCER THEY DID NOTHING TO INFORM OTHERS??? ITS GOT TO START SOMEWHERE!
PLEASE READ THE LINKS BELOW,ESPECIALLY "SHORT BUT POWERFUL INFORMATION". IT WILL TAKE ONLY A FEW MINUTES AND THEN PASS IT ON TO YOUR FRIENDS AND FAMILY. (THIS IS A REAL EYE OPENER)  
ASK THEM TO KEEP IT GOING UNTIL PITUITARY TUMORS ARE RECOGNIZED AS SERIOUS OF A DANGER TO YOUR LIFE AS BREAST CANCER IS.

***Think about this. After a certian age women are told to have a mamagram every year. Now i'm considering 1 in every 4 women have breast cancer and this is why. That being the case, should not everyone at Least by 35 or 40 have an MRI every 2 years until menapause??? It just makes good common sense to me!***
***SHORT BUT POWERFUL INFORMATION***
THE MAIN SITE
http://www.pituitary.org/

Please feel free to contact me.

I am just about positive i will know this week what kind of treatment will be used and if i have to fly to NC. This blog is also where i'll post my treatment,so check back when you can! I love getting messages :). I did re-read this and edit as best i could. My writing ability for someone to be able to follow is greatly lacking right now. Just overlook what dosent make sense and know i tried :)
With Love,`Cj
pituitarytumor_awareness@yahoo.com
May the Lord Bless You and Keep You!
Cj

2 comments:

Moge said...

Been waiting for this blog entry to get finished.
Love the pick using silver for pt. awareness. Problem is until there is a non profit that would actually support patients dealing with this then I would personally withhold promoting this even tho, I have a family member dealing with this issue. There are fantastic research organizations earnestly devoted to research. They truly deserve the support they get. PTNA is one fine organization. With competing health care dollars today, this puts places like PTNA against pits patients. irony.... Sometimes these tumors or their secondary effects for a variety of reasons are resistent to treatment. Macroadenomas long term are 50-60% resistent. Insurance caps already exceeded the daily essentials fall away. Let patients decide and direct funding, not the pharmacies, not just the physicians, PT patients typically get diagnosed after 10 yrs of hard persistence, their expertise has to be part of the research process. It's not!
Your just now entering the post diagnosis phase of this and Congratulations on obtaining a dx, that in itself is huge, your perserverance got you there. I pray your treatments bring you perfect healing.
For the patients whose disorders are resistent, precious health dollars that could save their life are spent of further research. It's wrong. Patients first then research. 10+ yrs into this closer to 20 now. every dollar has been long spent. Resistant P.tumors are one of the most expensive disorders in the books. Medications can run 4-20 thousand a month for a lifetime. Let's find a balanced approach, research gets what they need and patients also receivr the treatments they need. The medications alone can be outrageous I don't understand it, with the Orphan Drug act already funding the pharmacies and still these drugs cost this much for not so rare medications. 1 in 5 20% not so rare. It is true the same pharms producing these drugs qualify for this funding. HOW????
Im not a mathmetician, but guidelines for Orphan Drug funding I think I read fewer than 20,000 people affected. But then it gets muddy. is that incidence or prevelance?
Balance the dollars for this disorder, Doing this I believe will not only help P. tumor patients today, in the end countless patients with endocrine problems will benefit from what is learned by treating/supporting resistent p. tumor patients today.

I agree in theory with your suggestion of including screening of some sort as frequent as breast or prostate cancer screenings are done. I would look for other methods. MRI in themselves don't emit low level radiation but often this is injected into blood streams to enhance tumor images. Arguments have been made and suggested low level radiation may trigger these inactive tumors to become active. So ironically the very tool to dx this may trigger it.
Last month VARI (a distinguished research facility) identified a gene mutation that is definately associated with pituitary tumors. I think I blogged about it, if not I'll come back and write about that in my blog. So maybe blood tests, gene testing would be a venue to filter out those at risk. Maybe other blood tests could also be done first to que up some patients presenting with 3,5 or 7 positive values for p.tumors, those then get MRI.

Best thing of all is for all of us to keep talking and learning.

I give you Gold Stars for a great article. Thank you for all you do to promote awareness. That's what it's all about. Together we will all find our answers.

Cj said...

I totally agree with you! I've been researching this and menapause for 3 years,and to be totally honest i'm so sick of it.If i can inform One person and it may keep them from going years with wrong diagnosis and eventually like some of the precious people i've read their posts here,what little i can do to bring awareness will be worth it.
I also support the PNA, it has been a lifeline! Even with all my research it took an interested doctor who knew nothing about these tumors to do some research of his own. He came back to me with the PNA! Thank God for the few drs who are willing to learn! Paitence first, what an odd concept with the greed of our society. When patients have some knowledge and power over their own healthcare, they dont just take anything a doctor tells them at face value.I'm tired of doing the job the specialist is supposed to be doing, dont mind informing doctors outside this field, but this goes so far beyound even common sense its rediculous! Blues Post, all that medication and what its cost HIM to say the least! the insurance etc, i think its a crock! Drs have been leading me down that same road! I know my body,if it had not been for a duke dr finding the first one in 04-05 from the mamagram that nearly caused me to pass out,(that is the First time i have Ever seen that) and the woman said, that happens alot,don't worry about it. So what does that tell you! But the dr picked up on it right away. I'm probabbly repeating myself, an hour or so on a computer and i feel like running! :o). FYI... had to talk to the ins. lady yesteday, spent an hour iforming her about this. I kept telling her i knew she was busy and i would go, but she wanted to hear more. Next thing i know she is at pituitary.org telling me what she's reading. That was worth an hour to me. Thank you so much for your message, i only wish those who need to hear it could.(well,more like-Would). I'm off of here and getting out of the house!
`cj