Saturday, January 17, 2009

Congratulations, Brain Tumor Foundation

The Brain Tumor Foundation recently launched its Mobile MRI Unit, "aimed at broadening public awareness about brain tumors and the urgent need for preventative brain scans."

Good Job! See their website:

for more info. If you suspect that you might have acromegaly but you can't afford a MRI, check out their schedule to see if their free Mobile MRI Unit will be coming to a location near you!

Video about early detection by the Brain Tumor Foundation.

News Coverage of the Mobile MRI Unit along with interview and footage of someone actualy getting a MRI in it.

The Brain Tumor Foundation was nice enough to allow me to attend their support group right after I was diagnosed with acromegaly, even though a pituitary tumor isn't exactly a brain tumor.

I'm a huge supporter of early detection, though I'm not sure random brain scans of people who happen to be interested is the best way to find undiagnosed acromegaly. Maybe for brain tumors, but there are plenty of symptoms to look for first with acromegaly. My only other concern with the idea of the Mobile MRI unit is, I don't know how good it is to discover you have any kind of brain tumor while you are uninsured, because how are you supposed to afford treatment if you can't afford the detection? I'm pretty sure you will encounter "pre-existing condition" problems if you try to get individual health insurance. You folks living in countries with nationalized health care have much less to worry about!

Wednesday, January 7, 2009

IGF 1 up!

Guys, I need a bit of help! My IGF 1 is going up, now at 454! Normal upper range value (reference value indicated in my lab test) is 307. Four months ago, it was at 404.

My GH values are: (1) 2.65 (baseline) and (2) 1.65 two hours after glucose load.

Overall, my results are not good! Problem is that we don't have the medicines here in the Philippines. I am not having radiation therapy! It'll freak me out! That's my last option.

My endo said that she will need to confer with a colleague from the U.S. on what medicine to prescribe. Seems like I'm her first acromegalic patient who's thinking of ordering the expensive medicine from abroad. The prices are so scary!

My prolactin values have always been normal. Hence, initially, my endo is thinking of giving me Sandostatin. But, next problem is how it'll be shipped as I've read that it has to be shipped overnight!

I'm worried, and I feel helpless...