RE: my son Jake

[Guest guest]

Moana, is the test you are talking about an ACE level? The ACE, along with sed rate, c-reactive protein & others can indicate inflammation. It's not specific to sarcoidosis, but if they rule out all other possible sources, then sarcoidosis (or neurosarc if there are signs of central or peripheral nervous system involvement) gets credit for it. But you can also have normal ACE & other markers for inflammation & still have sarc, so that's why it's so tricky. There is a test called a Gallium scan which can show up areas of the body with inflammation, but again, it doesn't tell exactly what is causing the inflammation. I know how frustrating & scary this can be for myself as an adult; I can't imagine how you must feel trying to do the best for your young son. Look for the message I posted earlier Tuesday (oops, EST in the U.S!) about talking to doctors. You might get some ideas there. And take someone with you who is not too emotionally involved. This person's job is to make sure that all your questions & concerns are addressed before the doctor leaves that room.

I'm going to send Jake a card I think he'll like. Tell him it's from Indiana, where we have lots of farms, corn, soybeans, hogs, chickens, & horses.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: my son JakeDate: Mon, 10 Jul 2006 23:52:44 -0000

Hi just thought I 'd let you all know Had Jakes blood results back today and they are double what they class as normal but on the other token the other test they do to conteract this is completly ok with in range. So back to sqaure one again doc going back to radioligist to go over his MRI may have to go back soon to see them. I would like them to do full body scan to make sure there are NO other tumours in his body but they don't want to listen to me getting really P***** off now. Oh Well catch up soonMoana Waldron Mum to Jake 9.

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