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Mommyof1
06-29-2009, 02:56 PM
So I went to my rheumy...again. Heres what we have pieced together... I have had 3 positive anas (1/160, 243 and another 1/160). I have also had elevated CK results including(277,352 and 157.) Based with that and my symptoms she is thinking it is autoimmune but not calling it anything but "lupus-like" at this point. I was prescribed 375mg of naprosyn and I went to see an eye dr today to hopefully start plaquenil. I am still in the "loop" of a diagnosis and was wondering who else is out there in this situation. What keeps you from being diagnosed? The seizures I had at 15 completes my 4 needed criteria for it but she isn't counting that one....? Anyone else? -Britt

Danica01
06-29-2009, 08:10 PM
Britt,

I was in that whole process for soooooooo may years!!!!!! It is very time consuming and emotionally and physically draining!!! I am sorry you are going through this and hopefully you will have more definite answers soon! There are a few people who are going through the same process as you right now and I am sure they will have more encouraging words for you! One thing to keep in mind is that a doctor will put off diagnosing you until they are 100% sure that is what it is. I found that this is because it is easier to say they "think" that it could be Lupus than to tell you it is and a few years from now have something come up and they have to tell you they were wrong. Another thing that is a factor is that there are sooooooo many autoimmune diseases under this enormous umbrella. A lot of the diseases will share the same symptoms and even piggy back each other, meaning that you could have more than one autoimmune issue at the same time. So, there are times where the doctor may lean towards Lupus but your symptoms could match 3 autoimmune diseases. It is a wishy washy experience and it is very hard. I think one thing that comes out of every autoimmune issue we encounter is patience. We have to learn it very early on and it is not fun!!!!! I wish you nothing but the happiest days to follow and I will send good thoughts your way. They will figure it out.......hopefully sooner than later but until then keep your head up and lean on us when you need to. You are not alone and will never be!!!!! Keep us posted on what happens :angelic:

abbasgirl
06-30-2009, 06:46 AM
Britt, I'm in the same boat with you. I'm just now getting used to the thought that this could take years. I spent a nearly a year refusing to accept that. Danica said exactly what I've been learning to accept. (((((Hugs)))))