Well, I guess I went about things wrong the first time I posted. I should have came here to introduce myself but the night I did post, I was so frustrated and disappointed I vented as soon as I found people I could share with :). I'm not sure what diagnosis I am going to end up with, I just know something is going on and it has me scared. I have had various neurological problems since 2006, my last an episode of stroke like symptoms that they don't think was a stroke. I have also been what I termed "absentminded" the past two weeks but have realized may actually be what you all call "brain fog" - love that thread by the way! Over the past month, I have done so much reading on neuropsychiatric SLE and felt it could explain so many of the things I have been through. It is frustrating to see a Rheumatologist who will not even consider the possiblity even with a positive ANA of 1:640 (speckled and centromere). My neuro says I have inflammation of the brain area but he doesn't think it is MS; after reading about that as well, I agree with him. He really feels it is autoimmune. I cannot help but think that if all my symptoms are in the CNS, then maybe all the lab answers are there as well. Although the rheumatologist is the one who mentioned a possible second spinal tap the first time I met him, he completed dismissed me because the only blood test to come back positive was my ANA. He even admitted there were tests that could be performed that could possibly indicate lupus if I were to have a spinal tap but he just said I have limited scleroderma and if I did not want to be treated for that, I don't need to come back to him. It's like I went to the store to get the fixin's for pizza and walked out with tofu (no offense to those who like tofu :) ). I don't like tofu, wouldn't know what to do with it anyways. I realize limited scleroderma can have devastating symptoms but they are not bothering me right now. I can live with a few minor things, what I cannot accept is losing my mind. I have two little children.I am managing right now but I cannot let this keep going undiagnosed and untreated. I have to think of the quality of life I can offer them down the road and to do so, I have to know what I am fighting.
Thank you for providing this space to vent, talk, and laugh. I have done a lot of reading since I first posted and love the opportunity to learn from so many people who have similiar but different stories as I.
I looked scleroderma up.. It shares a lot of the same symptoms with Lupus. Since both diseases are also treated with the same medications, maybe you could ask the Rheumatologist to start you on treatment and see if things improve? As far as helping with the brain fog, I take Adderal for ADD and it does really help. This entire autoimmune diagnosis/disease is for the birds! I hate the fact that there is no real test for any of this stuff. I would feel much better if there was a test that said yes or no! I worry about taking the medications long term and then having a doctor tell me, no, you don't have Lupus you were mis diagnosed!! Yikes! So, it can go either way. Good luck to you! I understand how frustrating this can be!
Kjell, thank you for you response :) I definitely understand the fear of misdiagnosis that's why i want another spinal tap to confirm or rule out autoimmune. The rheumy said that there was no possible way scleroderma is causing my neuro symptoms and those are my most concerning symptoms. He said in order for me to have neuro psychiatric sle, i would have to have a positive anti dna ds and antiribosomal somethig or another. What gets me is everything i have read and from people's stories on here, there is no test that must be positive for diagnosis but the doc made it seem so black and white. I'm going to talk to my neuro (who i love) and get a new game plan- hopefully one that includes a second opinion.
Hi nikkira333, and welcome to the WHL forums. Be sure when you talk with your doc(s) that you describe as accurately as possible your symptoms. I have to write things down and then try to remember to take the notes with me when I go to the docs' offices. Try not to have pre-concieved ideas of what you may or may not have. All of the autoimmune diseases exhibit very similar symptoms, and it can take a bit to sort 'em out. Blood tests help diagnose, but are not the "be all, end all" of a doctor's decision. They should use the interview, signs, symptoms & tests all together. I would try to find other means of diagnosis other than a spinal tap. I do not like them, and they're not the simplest procedure to perform...
Hi and welcome to the WHL family! We are very glad you are here. We all understand the frustration of AI issues.
When you find a new rhumey that you feel more comfortable with if they mention the scleroderma I have to agree about starting on the meds. I have a friend with it and we take the same meds for our general symptoms. While it is hard, you have to be your best advocate and be knowledgable without boxing yourself in to one diagnosis. There are 63 AI diseases and so many on them share symptoms and overlap.
Just know we are here for you as you go down this path.