Good news, bad news & next steps

[BKreader]

I met with my Rhuemy today. She explained very clearly why she was changing my Dx to primary Lupus and secondary atypical Sjorgren's with the possibility of MS or vascular disorder. Yikes! I am so thankful my husband went with me today. I told him I felt like this would be an important appointment and I needed his support. He totally gets it now. I don't feel like he fully understood or believed what was happening to me before. No more comments like, "maybe it's peri-menopause?"

The good news is my compliments were totally back to normal so she is ok with holding off the Imuran that I was hesitant to take. I'm off to the Neuro next to explore my continued neurological issues. She is also requesting a nerve biopsy. Has anyone had this done? What can I expect?

[Joe S.]

A valid Dx is so important to our overall health. I am glad you got it. Also, having your significant other understand what you are going through...priceless!

[Sleepy In Seattle]

I have primary Lupus/secondary Sjogren's, APS (a clotting/vascular disorder) and Raynaud's. They all get treated roughly the same way, so it's NICE to have a diagnosis, but usually treatment is really based on individual blood work and symptoms anyway.

I have had great luck with Methotrexate over the last several years....once my body got used to it, I have almost no side effects and it has improved my overall health tremendously. I also eat a very healthy, gluten-free diet with few processed foods (though I do have an occasional treat) and I take some supplements (vitamins, turmeric, fish oil, etc) that seem to help.

Lupus can sound like a really awful diagnosis, but it's not always severe, and there are treatments that help a lot. It just sometimes takes a while to figure out what works best for YOU, as we're all so individual in how our disease process works, and how medications work in our bodies.

It sounds like you have a great team of doctors to help you out in getting effective treatment and understanding what's going on.