I am SOOOOOO frustrated/angry

Hi all! Sorry for not being on here for a while. I have just been so angry by being told for a long time I have SLE, then now this new rheumy who did a specialized test last year said I do NOT have it (could it be in remission?) But the PA did say I have a high ANA titer, and did I ever have liver disease because my anti-smooth muscle antibody came back highly abnormal. I have had problems (in 2012 I lost 25lbs in a month), but I'm also taking migraine medicine almost every day for these headaches! And my kidneys aren't functioning correctly for a woman my age (I'm 43....far as I know they are fine). So, does this mean it's in remission? I am now starting to get really bad leg tremors where they wear me out. My neuro did an MRI of brain (had some white spots, like little pea shapes) and cervical neck. Nothing. So he doesn't know why. he said I don't have MS...what the heck??? Well then what DO I have??? I found out from my mom that she and my aunt used to make fun of their grandma when they were little because her hand would shake while trying to eat. ??? So I don't know what the hell is going on. All I know is, the meds the neuro gave me seem to help with the headaches but not really the tremors. Any advice???? I am at a loss here...and I don't want to sound like a hypochondriac either. Thanks all!


Hi Pyxie,

I had a hard time getting diagnosed because I would only show a positive ana sometimes with a slightly high titer and sometimes with a very high titer. The rheumies and neuros kept pushing me back and forth saying no autoimmune, no ms must be the other. It turns out I have lupus attacking the nervous system and brain. I ended up with a rheumy who talked my neuro into doing a lumbar puncture and that is how they found the clinical evidence. This causes involuntary shaking and several symptoms similiar to ms. My neurologist admitted to having no knowledge of this and is having be see a specialized counterpart. I do not think neurologist are well versed in this and know to look for it. I shake outside when I am tired and I feel shaky inside. I also have as i mentioned earlier involuntary movement mostly on one side. This would be something worth you checking into. What you wrote just sounded so familiar. If need be ask for a lumbar puncture, it's no fun but it helped save me. Good luck.

Most likely you are in remission! It doesn't mean you won't have bad days, but if your ANA tier is high it is likely that you were in remission at the time of the test. Keep strong!

My ex primary once told me after a pos biopsy for timid lupus, I don’t know think you have the real lupus… Empathize with you

Once they did the lumbar puncture, as you stated you had your brain and nervous system compromised, what did the doctor do for you? I have the same issues and my neurologist wants to do a lumbar puncture. What was the outcome and are you on any medications for this

Hi Poker Face,

The lumbar puncture was the key for me. It was very difficult for me because I was so sick and afterwards I got even sicker, but I needed to do it and would do it again. When you are ready to have it let me know. I can give you a heads up of what to expect which would have helped me. When I received the results they found a high level of immunoglobulins in my fluid. This indicated either a blood cancer or an autoimmune disease( ms or lupus attacking brain and nervous system). They had to rule out the cancer first so I saw an oncologist who did blood work. After that the rheumy started to treat me for cns lupus. I started with 3 pulse infusions 3 days in a row of celi medryl (not sure of the spelling). After that he started me on 30 mg of predisone and he has added in 2000 mg of cellcept. He will start to ween me off the predisone when he sees the cellcept starting to work. At first we thought i was having issues with the cellcept but it turns out it's ok. Which is a good thing because the other drug he would have to put me on is injection only and it will cause me to lose my hair and it is very hard on the organs ( i can not remember the name of it, but i think it might be a chemo drug). I am thankful i am tolerating the cellcept. My brain feels like it is starting to clear. I am not having as many episodes as before. I still have bad days, but i notice they are worse when i am extremely tired. The fatigue is the worse. Do you also get the internal shaking? I hate it. I also hate the feeling like i am running a fever all the time. I hope this answers some of your questions and let me know if you have more. It feels good to have someone who is experiencing something similar because it can be very scary. Good luck and know there will be help and you will get better. Take care.