I'm just going to forewarn you that this posting is more of an informative post than anything else. It's something I'm personally dealing with, so I just thought I'd share. You never know who might stumble across this blog looking for answers; same as me.
It all started in Fall of 2008 and over dinner I realized I couldn't taste much of anything. Like I was eating with a burnt tongue. I'm one of those people that constantly burns their tongue on hot food because dang it, I'm hungry now and can't wait for it to cool off. So, I just thought it was one too many burnt tongues and I'd have to wait for my taste buds to come back. They never did.
I went to a couple different doctors who just looked at me funny; they didn't see anything physically wrong. But come on, it's not in my head, quit putting me off! One of them sent me in for a ton of bloodwork, about 15 tests. Everything came back normal except for my SSB Sjogren antibody. It should be below 1.0 and mine was 3.1. Neither of us really knew what that meant except that I needed to see an expert, in this case, a Rheumatologist. This could potentially be Sjogren's Syndrome (pronounced SHOW-grins).
What is Sjogren's Syndrome? It's an autoimmune disease that normally manifests itself as dry eyes, nose and mouth but can lead to other problems, such as nerve and kidney problems and sometimes Lymphoma. There are two types of Sjogren's, primary and secondary, mine would be primary which means it's not caused by another disorder, but exists on its own. And in doing my research, I've found that my Trigeminal Nerve (taste) has been affected and I've always had Raynaud's Phenomenon. Raynaud's isn't tied to Sjogrens, but those with primary can also have Raynaud's. This is a circulation thing and when my fingers are exposed to extreme cold, the top portion of all of my fingers turn white until I warm them up again and get the blood flowing. Honestly, I always thought that happened to everyone's fingers, but hey, you learn something new everyday.
So, I'm seeing a Rheumatologist next Wednesday and we'll see what she says. It's an appointment I've been putting off, mostly because I have to drive out to BFE to go (seriously, HMOs suck). But hopefully, if it is Sjogren's my regular doctor can help with treatment. I can't imagine making the drive out there on a regular basis.
So that's that. Sorry for the novel, but hey, maybe someone with similar symptoms will read this and find an answer. One in 70 people has Sjogren's and 95% of them are women.