Re: hello sarc family

[Guest guest]

Barb, this is excellant. To be able to get in early and get some direction in treatment options is a good thing.

With liver sarc-- generally the liver enzymes are going to be high. This is done by blood tests. They can do an ultrasound to see if your liver is enlarged, and also a gallium CT scan to see if you hold the gallium (radioactive iodine) in your liver longer than normal. They can also do a liver biopsy-- but if you already have biopsy proven sarc-- then the other tests pretty much tell them what is going on.

I learned about the Milk Thistle from a dear friend that had had childhood Hodgkins in the 60's-- when radiation was first coming into play with different cancers. She was the oldest living Hodgkins survivor who had gotten radiation for it as a kid. She passed away last year- from complications of the high dose radiation and all the scarring that had occurred from it.

She'd developed liver cancer, and it spread through her body (she was in her early 50's) but her oncologist had put her on Milk Thistle. Her liver looked healthy and had actually regenerated greatly, but the other organs had suffered from too much radiation.

I've seen a huge drop in my liver enzymes since I started using the Milk Thistle, along with my Remicade and Plaquenil and Methotrexate for the systemic sarc.

I can always tell when I've not been getting enough fluids down-- or have slacked off on my Milk Thistle-- I get NASTY, nasty upper right quadrant pain right over the liver-- to the point that my muscles spasm and lift the ribs up onto the others- so I know I've blown it. So back to the Milk Thistle and getting enough fluids down to keep the liver as detoxed as possible.

So-- what type of specialist are you seeing in Cleveland? You mentioned that you have systemic sarc also-- so are they starting you with a Rheumatologist or Neurologist? Take a list of the meds you are on-- and what you've taken in the past-- as well as any questions you may have. Take a friend so that there is an extra set of ears in the room-- and you may very well want to take a tape recorder-- so that you can tape your interview with the doc-- and listen again later to the answers.

If you have any CT's, MRI's etc-- take them along.

TAke care and I'm sure that you'll get some help.

Sincerely,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Tuesday, December 23, 2008 9:32:02 PMSubject: hello sarc family

i was supposed to go to cleveland in january,but i was called this morning and they want me to come in on friday the day after christmas!! i am very nervous and not sure what to expect .wish me luck!! by the way ron happy belated b-day .oh yeah how do you find out if you have liver sarcoid? ttys barb