Undiagnosed but some labs positive
I will try and make this long story as brief as possible. I've been having symptoms for several years now, symptoms that eventually ended up changing my life drastically. I used to teach dance, perform, and I was an avid gym-goer until I just couldn't do either anymore (several years ago). This didn't happen overnight but insidiously. I remember the day I knew I had to give up dance and stay away from the gym, and I will never forget how devastating this was. I blamed it on age, as well as the hair loss (which happened quite rapidly), and tried to keep going. No insurance until 2014 meant rare doctor visits and only if I had to. Fast-forwarding to now… it's worse, much worse.
While many lab values would come back out of range/abnormal, they were never in the right combination I suppose to get a diagnosis of anything. Fast-forwarding again… I had lab work where a lot came back abnormal, but no one paid any mind to anything but the elevated liver enzymes, and only passingly elevated Aldolase (many times the normal range). A liver specialist (after a liver biopsy) said I had Autoimmune Hepatitis. 3 months of predisone and Imuran… and symptoms began to show again after the prednisone and Imuran was stopped. In fact, it was absolute agony tapering off, even slower than most do. Fast-forward again….
A couple of months ago I had lab work done with my PCP which showed elevated ANA. ANA 1:640 Homogenous pattern. Another doctor repeated the labs and found the ANA to be the same, DRVVT was high, and showing Anti-Histone antibodies. That doctor said I have drug-induced Lupus and added that it's the Nexium I was on. He pretty much left it at that (was a note via their patient portal system) and didn't tell me what to expect, etc. He only said stop the Nexium, which I did. I'd only been on Nexium for 3 months, and I honestly wasn't religious with taking it and missed doses several times per week.
I went online looking for information as to what "DILE" was exactly, and what I found confused me further. All of the information re DILE I saw related to drugs I'd never seen, heard of, and never taken. When I looked up drug-induced Lupus and Nexium… I found information re Drug-induced Subacute Cutaneous Lupus Erythmetosis (sp?). The photos, information, etc. on DISCLE didn't look or sound anything like my symptoms. I'm at a complete loss as to what to think or do at this time, and I am beyond miserable.
The symptoms I have are not new but ones I've been dealing with for a few years.. only now worse. My liver specialist suspected something else was going on due to symptoms and the elevated Aldolase, which eventually went back into normal range after being on Prednisone a few weeks. My Ophthalmologist strongly suspects Sjogren's (a specialty he treats) due to my Schirmer's test having results of 1 and 2. I read about "Seronegative Lupus," but I'm not sure I know what that is exactly or if it's my situation. All I know is I have a lot of horrible symptoms and can't even work now, or stand long enough to do dishes, etc.
As an aside, I'm told I have Erythromelalgia… which is very painful.
Debilitating fatigue (I get worn out just from having a conversation or reading)
Severe dry eyes
Severe dry nose
Severe dry mouth
Severe vaginal dryness
Joint pain, swelling
Loss of appetite
Photosensitivity (carry an umbrella everywhere I go)
Skin rashes that come and go, especially with sun exposure
Big toenails tend to fall off on occasion, but no one can tell me why
Severe hair loss
Scalp inflammation that often comes with sores (flares, not constant)
Overall feeling of having the 'flu' all of the time (without actually having the flu)
Weird body temperature changes: "Normal" temps for me is from about 96.5 to 97.. anything higher is usually a fever (doctors don't get this, though my in-office temps are always very low)
Swelling in hands, feet, fingers
Odd cramps in the sides of my calves at night that 'twist' my feet at odd angles. These cramps/spasms are so strong I often can do nothing to move my feet or stretch the muscles.
Serious brain fog
Dealt with severe IBS, then now constipation
Have been iron deficient (treated with 2 IV iron infusions)
Now showing not deficient in Iron or Ferritin but low on TIBC (Unknown as to why)
Have been Vitamin D deficient and had to take supplements for a few years.
I may have forgotten some things, but that's the gist. I'm so tired and sick, and my quality of life is radically different. I get so weak doing dishes that I can't stand up anymore. My arms ache and burn from folding clothes… and while typing.
How do I get a referral to a Mayo Clinic doctor? Rheumatologist? I think this is probably the only thing I have left to try and find out what's wrong with me.
Any suggestions or information would be greatly appreciated, as my symptoms long proceeded my ever taking Nexium. I want my life back.
Thanks for allowing me to vent.