Cushing's Disease

I went to the DR Friday afternoon to discuss my lab results and MRI results. The diagnosis was clearly made. Cushing's Disease.

I now have referrals to see a few specialists and for some more radiology scans. I have a referral to Radiology for a CT scan of my abdomen to check for internal bleeding (this is because of some of my unusual symptoms). Also, I have referrals to meet with an Endocrinologist, a Gastrointestinal Specialist, and a Neurosurgeon.

I have a Pituitary Gland tumor that is messing with my hormones. This gland is the one responsible for telling the body how to function. Mine is acting up because of the tumor and telling my body's organs and my body's chemicals to do the wrong things. The sooner treated the better because it could cause damage that can't be reversed.

My DR said that my weight and swelling will go down and away considerably after a successful surgery to remove the tumor, if that is the route we're able to go. That is what I meet with the Neurosurgeon for. Unfortunately, any other ailments that this gland causes along the way can be permanent damage.

This explains a lot of my pain, so it's good to know I'm not crazy and I haven't been hurting for some reason I'll never understand either.

I guess when people told me "It's all in your head!" that since I have a Pituitary Gland tumor, they were right?

I wonder if I have a medical malpractice case against Mountain View Hospital for finding the tumor on a CT scan in 2006 and telling me they would refer me for an MRI and then not giving me the referral as promised and downright refusing to give me my referral upon request?

I'm getting sicker everyday and new symptoms seem to come about almost daily. My DR won't even prescribe me any pain medication because she's afraid I might have internal bleeding and doesn't want me to mask the pain because if it's "too bad" she wants me to go to the ER. Ugh! It's bad alright. If she's that concerned shouldn't she have sent me for an emergency ultrasound or emergency CT scan? That doesn't make much sense to me.

I'm a little concerned about the whole internal bleeding too because of my symptoms and because my blood pressure was so low today. It was 127/71, pulse 76. My blood pressure has not been that good since I was a teenager! And my pulse is never that slow either. Normally I would be excited and happy that my blood pressure medication appears to be working wonderfully. However, when internal bleeding is a possible cause for that nice little reading, it's a whole other playing field!

On the bright side: I'm not a fatso with a eating disorder and I have not done this to myself. Even better, the fat and swelling are supposedly easily reversed. Knowing that helps with the depression I was starting to feel.

The DR said she's sort of using me as study-guide and learning from me because Cushing's Disease is so rare. She said I am only the 2nd case she's ever seen and the 1st of her very own. I just hope this means she will be very careful with me! Apparently Cushing's Disease is only diagnosed in 10-15 people per one million each year. It's like winning the lottery, only completely opposite!

My joints and muscles along with everything else are hurting and she won't give me any drugs though. That makes me mad.

Okay, I found a few more helpful links with lots of stuff to read about this condition. I'll have to go over these more when I have time, which I'm sure I'll have plenty of if I can make it out of bed!

http://cushings.blogspot.com/

http://www.csrf.net/CopingAnswers.htm
http://www.aafp.org/afp/20000901/1119.html


In the meantime, I hate to even ask, but facing a fatal disease tends to put things into a different perspective I guess. It's not just me that needs help. My children and husband and Mom and everyone around will have to endure this with me. It's not going to be easy by any means for any of them. I'm getting sicker everyday and becoming more dependent on others, and feeling more and more guilty about it!

So..

If you can help us with transportation, meals, walking our dog, helping with the kids and/or the baby, house cleaning, entertaining our girls, -drugs for me (even with ins. the heartburn meds she did prescribe me were going to be too much $$ to have filled)- ANY help would be so very much appreciated!

:(