Welcome to our community, Annette! There is a lot of information for you here, so take the time to acquaint yourelf with the sections "Community Details," "Disorder Details," and the last dozen or so threads under "Discussion Forum."
Please fill out your profile page providing as much detail as possible on how you came to be diagnosed with SCLS, because we are still learning from one another. One thing you should know is that there are a number of swelling disorders which are NOT manifestations of SCLS. Ours is an episodic disease where if there is swelling, it comes and goes within days -- but it does not linger. Therefore, I suggest that you ask your main physician that he/she gather your medical history and send it to Dr. Kirk Druey at NIH -- see "Disorder Details" for his contact information -- in order for him to provide (or not) confirmation of your SCLS diagnosis. The last thing you want is to be treated for the wrong illness!
As concerns procuring IVIG treatment, this is indeed the recommended preventive therapy for confirmed patients with SCLS, but it is not yet an FDA-approved indication, and thus, since IVIG is extremely expensive, it is often rationed or even denied. In the case of the Medicare program for the elderly in the USA, up until now Medicare's contractors have routinely denied coverage of IVIG for SCLS, so the only ways to get it are (1) for your prescribing physician to make no mention of SCLS and attest that you have one of the several illnesses for which IVIG is FDA-approved; or (2) for your prescribing physician to make mention of SCLS, whereupon you may get the treatment but likely only by your assuming personal financial liability, followed by your having to appeal the Medicare denials that will come.
I am working on a solution to this problem with Medicare, so get in touch with me again if/when your SCLS diagnosis has been confirmed by Dr. Druey.