Hi everyone -
I am posting my story at the request of Quix regarding my official Dx of SLE (lupus) and the remaining possibility that I also have MS. Here is my best "in a nutshell" form (lol):
Ten years ago, when I was 32 weeks pregnant with my son, I developed a very rare virus that settled in my lungs. WIthin two days, my chest Xray went from clear to being in respitory failure. I was transferred to a teaching hospital (I live in Boston - there are many!) as they thought I wasnt going to make it, and they had to accomodate a 32 week premie. The problem was, they could NOT identify the virus - had NEVER seen it before (Im in some med books in Boston - truly!!). At this point, I had developed ARDS (95% fatality) and sat my family down to tell them I probably wouldnt make it. Well, they tried an experimental anti-viral drug, and low-and-behold - it worked. They didnt have to take the baby, and I ended up having him two month later - C-Section. OK - NOW....
Over the next year after having my son (who was beautiful and completely healthy, by the way!), I began having these strange Sxs such as: bad fatigue, headaches, blurry, spotted vision (lots of floaters), feeling "out of it" and generalized pain. I let it go for a while, and then went to see a rheumatologist at the suggestion of a friend who had just been Dxd with lupus - she said my symptms were similar. I went, ALL blood work was normal, and I had pain in joints, but no swelling. The rheumie said fibromyalgia and put me on Celexa for pain. Well, it helped a bit, and I felt better for a while, but never was completely without symptms. I just kind of dealt with it - slept a lot, took alot of Ibuprofen, etc.
OK - symptoms got worse, but they became really neurological in nature: severe photosensitivity with lots of eye pain, balance problems, bladder problems (constant insistency, inablility to empty bladder), numbness, tingling, burning, etc.. I decided to go to a neurologist (my Moms) and he felt that I was suffering from some type of post viral syndrome. He felt that the doctors successfully got rid of that virus in my lungs, but that it ended up settling in my CNS. He admitted me to administer IV anti-viral medications, to see if that might help. It was then that he also put me on narcotic pain meds for the pain. Well, I did start to feel better, but within a year I began having seizures that could not be explained. My joints were now starting not only to be in pain and stiff, but also started to swell. I went to a couple more rheumies - all who said no to lupus as my ANA was always negative. (Threre is no ONE test for lupus, but the ANA does point in that direction, and being negative here tells docs there is NO WAY it is lupus...or so we thought at the time). OK, fast forwad to three years...still under care of neuro, MRIs done that show first - brain atrphy incompatible for my age. The second had two tiny lesions in periventricular white matter - non specific. (Meanwhile, my neuro says NOT MS, really thinks this virus has now triggered an autoimmune response). The third brain MRI shows several multifocal lesions - does not think contrast is necessary..(?). At this point, I am on ALOT of pain meds, and truly dont know HOW Im feeling - Im pretty numb, and unable to truly assess my symptoms. I decide to go off all meds and leave that neuro. OK - from that time (2006 - present), I start from beginning - go to a new GP, who continues my anti seizure meds and anti-depressants. I am now in constant pain, and really bad neuro symptoms, AND now really bad rheumatic symptoms - joints now are REALLY swollen and red, blood tests are starting to become abnormal (STILL a neg ANA, however) I now go to an immunologist...He is VERY dismissive, I feel humiliated AGAIN (Ive left out about 3 or 4 docs visits where they could not figure out what was going on), and I say "Forget it!! Im done with docs for good!! Its now summer of 2007, and - for the first time since everything started - I am almost symptom-LESS!! I truly couldnt believe it...I had very little pain, very little fatigue, no swelling, vision was good - it was truly unbelievable. Fall of 07 comes around, and I begin to feel lousy...vision really off, REALLY bad electric jolts, jerky movements, new headaches (pressure in my head), balance. But, I also had now REALLY bad swelling of fingers, elbows, knees, edema in anlkes and shins...literally, I felt like I was falling apart. My CRP was through the roof, as well as my sed rate (Both are blood tests indicating inflammation). I went to ER a couple of times and was Dx with pleurisy, and possible pericarditis (fluid around heart). This is when they start the steroid tapers which begin to work, but as the taper went down, my symptoms would flare back up. I took a chance and went to see a NEW GP. I really had NO EXPECTATIONS at this point, but I went for my husband. At that point, my rhemie symptoms (joint pain and swelling, rash, edema, INSANE fatigue, etc) where so apparent, we actually never even got to the neuro ones. She looked at me and said, "You have lupus.." I said, "No, I dont...a ton of docs have thought so too, but I have a negative ANA" She said that 5% of all lupus patients have a neg ANA. She put me on steady, daily dose of predinisone, and plaquenil (lupus med). I was DRAMATICALLY better within days...including my nuero symptoms. When I told her about my neuro symptoms, she said that the lupus could be attacking the CNS. She sent me to rheumie, (who, incidentally, I had seen a couple of years before, and he said he didnt know what was wrong as blood work was normal at that time, but really did believe something was going on). I thought the rheumie was going to say that it WASNT lupus, and the other doc had made mistake. Well....he didnt. He said that there are very rare cases, where a patient exhibits more than enough criteria for a lupus Dx, but does not have the pos. ANA. He said that I was a Classic Case of this rarity. I was blown away. There are 11 criteria for a lupus Dx, and you must have 4...I have 9!! The only thing I DONT have is the ANA, and he believes that it probably HAS been pos in the past, but was missed (the ANA result can change for many diff reasons). He doubled the plaqenil, and wanted to keep me on the prednisone for one more month, and then try to taper off. That is where I am now...well, actually, worse than that.
So, due to a mixup at the pharmacy, I needlessly missed THREE DAYS of my prednisone dose (Quix - Im sure youre eyebrows went up when I said that - my doctor found out and almost fired the girl in her office who never relayed my refill request ). THis is VERY dangerous, but in my case what happened is I began to flare again. My symptoms were the same, but my neuro ones at this time are REALLY INTENSE. They are all huge signs of MS. Right now, because I started to flare, I was unable to begin the taper my rheumie wanted, and actually had to DOUBLE my dose for the next couple days into a taper, until I see rheumie next week. The plan is to begin Imuran WITH the plaquenil AND the prednisone, but hopefully this will allow for a lower daily dose of prednisone.
As far as my suspicions go, I still believe that there is an additional neurological component to all of this. Lupus CAN affect the CNS, but is VERY serious...I dont think that is going on here. I have not had a new brain MRI in five years, and I would be interested in what it shows. Believe me, getting a Dx of lupus finally was horrible (of course) but - as you all understand - there was a sense of relief, FINALLY, a sense of validation. In addition to being "believed", I was able to finally get treated, and try and keep this disease at bay. I have had lung, heart, kidney and liver involvement so far, but nothing TOO TOO serious that the meds couldnt settlle back down.