I just got back from the Rheumatologist.. I do NOT have Lupus.. I have "Limited Scleroderma".
I was not ready for that diagnosis.
I certainly didnt want Lupus, but I wouldnt want Scleroderma, either.
At this time, there is nothing except my bloodwork that indicates the Scleroderma. I have ZERO other symptoms.
No thickening of the skin. No Lung problems. No problems swallowing. No gastric problems. No constipation, diarrhea, or bloating.
Nothing but "Centromere Type" ( marker? test? I forget. what know for sure is that I asked her 3 times "NO lupus? NO lyme?" and she said "No, I ran the test / marker / titer (?) for Scleroderma and its positive.
She said something about some titer being 1:1320, and said thats waaay high.
So, she gave me blood pressure medication for my Reynauds b/c she said it is not a good thing to have so many attacks. ( I have them daily, and some days are worse than others ) and she told me to keep an eye on my blood pressure, as its usually low to begin with; she gave me a small dosage of the BP medication. she told me if my pressure goes below 90/60 to stop the meds, wait a few days, and try again.
I have to go back to see her in 6 weeks. before that, I have to have a lung function test ( there is currently nothing wrong w/ my lungs ) just as a baseline, then repeat it every year.
Whe I asked about prognosis, she said everyone is different: some people stay like I am right now, and thats it.. they never get sick. others get a little sick, and others get very sick. She said there is no way to predict anything.
She said as for other treatment, there is nothing to treat now, except the Reynauds.
Needless to say, I am going to find a Scleroderma board and find out all I can. I am also going to explore things like diet, etc, because I know there are people out there who have "put their lion to sleep" ( whether the lion is Lupus or any other autoimmune disease ) and who are able to KEEP the lion asleep and stop the body from attacking itself. (No, I am not going to send some quack off of the internet $5,000.00 for some ancient chinese herb that is supposed to cure me ) but I am certainly going to educate myself as best I can; I will make myself a Scleroderma / Autoimmune expert, and I WILL find a way to heal myself.
Im not saying it will be easy, that it will all be perfect and rosy, but i am saying that I fully intend to do all I can.
Thanks for listening.