View Full Version : Active Lupus

08-25-2010, 07:51 PM
Well, good news (I guess). I was called by the new Rheumy today and told that I do not have "active lupus". Not exactly sure if that means I don't have Lupus or that I don't have Lupus now but those were her words. I guess I should be happy but that means I am still in Limbo as to what is wrong with me. I have lost my job due to this stupid illness and things are not getting better but I guess knocking something off the list is still getting closer.

I will still post here since I identify so well with all of you and since I am still in as much limbo as I was when I started. FYI, I should find out about the MS any day

08-25-2010, 08:50 PM
You are always welcome here, Tgal.
Mine is called Mixed Connective Tissue Disease - it has symptoms from Lupus, Sjogren's, RA, Psoriasis, Polymyositis and just about any AI disease you can think of. All of the AI diseases seem to be inter-connected. We are just all on a different part of the spectrum, depending upon which symptoms we have.
Keep us informed about your results.

08-26-2010, 08:39 AM
Thanks, Marla. I am so ready for a name though! I don't know why that is important because I am on all the meds but I want a name for my enemy! I did get the results of my neuropsych today. It amazes me that I had to pay someone to tell the doctors what I have been telling them for well over a year. I have moderate to severe memory loss. I have decreased function on both sides of my body but it is significantly worse on my right. I am depressed and anxious (yes, because I want to know what is wrong with me!) but that there seem to be actual physical issues with my memory and motor skills. Well, now that the doctor tells them this I hope I can get an answer to what is going on. Well, that would be if I can get my neuro's nurse to call me back. She hasn't yet and I have called every day for 4 days.

LOL Thanks for letting me whine! I guess I should have brought the cheese too

08-26-2010, 12:10 PM
Hi Tgal;
The fact that you do not have "Active" Lupus at this point does not mean that you DO NOT have the disease. It really means that the disease is not active, according to your particular doctor's standards.
Unfortunately, if your organs are not damaged and your body is not making harmful anti-bodies, doctors say that your Lupus is not active. However, you can still be suffering from many of the symptoms of Lupus (just minus these particular issues) such as pain, fatigue, confusion, depression, sun sensitivity, and others.
I am considered to have "Mild Lupus", which means that, like you, my organs are not damaged and I am not making harmful anti-bodies, and I am not taking a lot of medications for this particular disease (I actually suffer from four overlapping diseases). But, oh Lord, I do suffer from my Lupus, just as you do, as well as from my other three diseases.
So, just because you are told that you do not have active Lupus does not mean that your doctors are ruling it out. Unfortunately, for many of us, it is a waiting game and doctors will wait until more symptoms appear and/or your disease becomes active before they will give your ailment a name. So, you are still in the right place here with us. We will continue to help you through this diagnostic phase and try to help you to cope with all that is going on. :-)

Peace and Blessings

08-26-2010, 12:28 PM
Thank you so much for the information. I believe that I, too have overlapping issues. I just got off the phone with the neuropsych doctor. The results of my test came in and I have moderate to severe memory issues (ya think?). I am OK when I get the information in my brain but I have a hard time getting it in there. I have loss of coordination on both sides but it is most severe on my right (and you guessed it, I am right handed). Now I wait for the MRI results to tell me if the memory loss and motor skills issue is from the seizures, mini strokes or MS. Sadly, I cant get the nurse for my neurologist to return my calls so I can get that info.

I only have one thing to say at this point. This disease SUCKS