View Full Version : New and Saying Hello to All

12-05-2012, 06:26 PM
Hello All..My name is Mandy..I am a Registered Nurse and I have Lupus..I was diagnosed May 2011 and my life has changed drastically since then. I went to a rheumi up until last month and she did nothing for me..She basically blew me off.gave me a few meds and something for the pain..I was also diagnosed with fibromalagia and rheumatoid arthritis. So I am in pain nonstop, sometimes worse than others..I am now seeing a new rheumi who is wonderful..I had labs last week and I was called a few days ago saying they were abnormal and I needed to come in asap to discuss and get more medications..So I am going tomorrow at 2 pm with my wonderful husband to find out the news and get more meds. I was only going to the rheumi once every 3 months now im going every 2 weeks..Having a good rheumi is a very important thing. Seeking the right treatment and researching is top notch in controlling your illness. I learned the hard way. My whole life has been in an uproar..I also am having mental issues and anxiety, also alot of uncontrolled anger. Im being tested for bipolar as well but as i read more on lupus I see it can cause neurophyschotic symptoms, so I am now starting to believe its from the lupus and not being treated properly. Does anyone else have these problems? I am lost at times and just dont know myself anymore. Its been awful.Please help!

12-05-2012, 08:07 PM
hi mandy, and welcome.

one of the easiest ways to let people know about you.....
is on your profile page.
please read mine to learn a little about me.

again welcome.

12-05-2012, 08:20 PM
Thanks Steve. I read your Biography.. I am sorry about you and your wife..My husband and I have been having alot of issues for years now..we r still together but its a miracle..I have unemotional mood as well and fly off the handle over anything..I throw things, hit the wall, etc..Its awful..I feel my brain stops at times as well. I get confusion so bad and this leads to even more anxiety. I just get so frustrated and sometimes dont know what to do. I like your forum and am looking forward to being a member and getting some good info that will help me in my journey with this awful disease. Thanks again.

12-05-2012, 08:43 PM
Hello Mandy and welcome!

I am really sorry you are dealing with all this, but I think you will find this forum incredibly informative and supportive.

While of course there's a lot of emotion that goes with this kind of health crisis and diagnosis, it is also very true that many autoimmune diseases DO affect your brain. I am really glad you have a good doc - you may also need a neurologist on your team, who may do some brain scans to rule out a bunch of stuff.

However - if they don't find anything on the scans it doesn't mean nothing is happening. Plenty of us here experience CNS symptoms that do not show up on any tests....and doctors don't really understand how or why...it may be inflammation in the brain, it may be circulatory issues that are so tiny and pervasive they don't show on scans - who knows? But at least the tests can rule out big scary stuff, which relieves a lot of anxiety all on its own.

Sometimes people find that they have undiagnosed food sensitivities, and working with your Rheum and nutritionist can be very helpful - I know that is very much the case for me. Gluten really sets off my brain fog!

Many of us find that once the disease is under good control, a lot of the CNS symptoms improve quite a bit.

Keep in mind that many of the medications take a while to work...sometimes months. Also, because every case of Lupus is a little bit different, it can take even the best doctors quite a while to help you find the balance of medications that works best for you. Don't give up!

Flourescent lights can be a real trigger for CNS symptoms especially - do you work in a hospital? The lighting there can be really hard on Lupus patients.

I hope you are able to get lots of rest. It can be totally overwhelming dealing with all this stuff - but people here are always so understanding, welcoming, and helpful. We all need to ask lots of questions and just VENT sometimes! I am so grateful for this community!!!!

12-06-2012, 09:30 AM
Hi and welcome to WHL! I am so glad that you finally found a good doctor! Sadly it often takes way too long for that to happen.

I have CNS Lupus and yes, it alters my mood and my personality. It has take. A few years (and doctors) to find the right meds to start bringing me back to a closer version of myself. The other issues that have gone along with my CNS (I have verified short term memory loss not just brain fog) are here to stay but once you begin the right treatments some things will begin to feel more normal.

you will hear many of us discuss our "new normal". It doesn't mean it is bad. Life can be rich and full with Lupus it just may have to be a bit different than you imagined. You are on the right path now. You can relax a bit because the answers are on their way!

12-06-2012, 10:16 AM
Hello Mandy and welcome to our family;
I, too, have Lupus and Fibromyalgia (along with several other diagnosis) and I know what you mean about always being in pain somewhere. Like you, I do not have one single day in my life when something, somewhere in or on my body is not causing me pain, fatigue, illness, depression and I could go on. But, as Tgal mentioned, we all strive to find our "New Normal" and we work hard to make our lives as enriching and fulfilling as we can within our new normal. Here at WHL, we all help each other to discover that new normal and to embrace those things that are truly important.
You've heard from other members that CNS involvement is rather a common theme for many of us and as such, we notice personality changes, memory loss, confusion etc. But, again, we help one another to find ways to deal with these issues and we support one another as we discover new ways.
You are very lucky to have found a rheumy who cares about you and who is dedicated to helping you get better. Too many of us are not that lucky and you are right, having a good rheumy makes such a big difference!
I am sorry that you have this disease, but I am happy that you are here and that you decided to join our family. Again...welcome!

Peace and Blessings

12-06-2012, 07:04 PM
Thanks to all for your concerns and replying..Alot of great info has been passed along to me and the support is tremedous here..I need that so much, just like everyone here does..I got my Ana titer back today was 1:644 and the double stranded dna was positive as well. They took a urine test, vitamin D and a micro albumin test today. SO awaiting those results..She did say It would be a good idea to be checked out at John Hopkins University..The problem is not sure abt insurance and if they cover or not..Maybe would if I had referral from Rheumi..does anyone know about this? Again thanks for all the thoughts and Prayers. And same goes out to you all from me and my hubby..Yes he is a wonderful man and dont know where I would be without the support from him..I am blessed as my whole family is supportive..Wanted to update you all..