Hi, Bon67, and welcome to this group of nice people. Receiving a diagnosis of lupus (or other autoimmune disease) can be frightening. But there is life after this type of diagnosis, albeit somewhat different. Autoimmune diseases can be elusive, so getting a correct diagnosis can take a looong time. Frustrating to say the least. Be sure to read some of the older posts, as they contain good information. Best wishes to you for getting answers. And feel free to ask questions. We're here for you.

Thank you Nanny (hugs)

I was so very sick of being sick that I was relived and terrified when I got my diagnosis.

I wondered if I'd ever get ANY better or if this disease was gonna take me out (it nearly did).

But, once you know what you're dealing with then you can begin to protect yourself, so try to look at it that way.

Hugs

Yes, you are exactly right, we thought it was MS, and I was so happy to finally have an answer, now they are wrong and I'm here. (hugs)

Have they explained to you why they think they're wrong?

I have a family member dx'd with MS, but I swear, I think this family member has Lupus.

Yes, they said that my lesions are not like MS lesions, even though they were in the deep white matter frontal lobe. So I don't know. Its all so confusing. Cant wait to get a definite answer. I always swore it was MS, but I guess they think Lupus, I don't have the rash though. But did test positive on the ANA test. My symptoms are horrible joint and muscle pain, extreme fatigue, numbness and pins and needles in my fingers and toes. Bladder retention. My right side went semi numb. Headaches everyday. and tons and tons of other strange symptoms, haven't been able to work since the end of July, and waiting on the second try for disability.

Oh Dear. I'm so sorry.

You need to make sure your doctors know about your disability claim and that it's "in process". Don't give up.

I have CNS Lupus. It attacked my brain, eyes, and spinal cord.

There is life on the other side. Maybe not the life you had before, but life. And that's precious in itself. The sooner you get a diagnosis, the better off you'll be.

Do you have a good Rheumatologist? Neurologists totally missed it in my case.

Yes, I have a good Rheumo, but I cant get into see him until April 18th, long wait.

Hi Bon67: I waited forever to see my RA but it seems like once you get in, its much easier to get follow-up appointments. I have had a bunch of initial tests from my primary care then the RM ordered more specifics. Positive ANA and Anti Native DNA Antibody, C3 and C4 Compliment below standard range. Looking like Lupus? My RA cut my prednisone in half to see my symptoms come back and the pain definitely is. I love my prednisone! LOL! But I do! I'm also on Meloxicam but this am I took Ibuprofen for the first time since January and WOW it helped so much but I'm sure I shouldn't be taking it. Sorry Bon i came here to encourage you and am talking all about me. Point is, as everyone here says, getting a diagnosis is so important. I feel like then I can come up with a plan and move on! xob

Thanks Bella