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.
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@summershadow Hey, look, friend, many of us have been living with this a long time. I am 78, and have been living with this uncertainty since age 5, that I know of. But a couple of suggestions. First, push your doc to order a Bindings (UK) SERUM FreeLite(c) (sFLC). Medicare covers it, and it is cheap anyway. It will pick up almost any mis-folded protein masses in your body. Tiny bits of mal-formed protein which will not show up in your urine or plasma will cause hell with your body, including almost everything you mention. It will either rule in or rule out classes of autoimmune stuff, and may pinpoint. Get it through Mayo-Quant labs in Rochester or ARUP labs in Salt Lake City. Mayo can also do the gene-sequencing protocol on you to pin it down. They have the equipment and the personnel. Also, for almost everything past blood type, forget your local labs and go with the top-dog labs, Mayo, Stanford, Sloan-Kettering, etc. Also, go to the search engines of these labs, plus pharmas such as Pfizer, Alnylam, for help. And purchase a pew with NIH library. Anyway, long story shortened, you are your own best witness to your body and how it is working. Finally, you can get a lot of stuff free from my work for myself at https://bit.Ly/1w7j4j8
Sorry that you are so sick. Finding out the solution
can be so hard. I had so many of your issues and
finally got my answer after 53 years of suffering.
I have Celiac Sprue. Has anyone offered knowledge with respect to a food issue at all?
When the gut biome is upset many things can go wrong. Maybe try the AIP way of eating for as long as you can and see how you feel. It rids you of exposure to all inflammatory foods and allows some healing. Just a suggestion, you might have tried it already. It is my miracle, but we all work differently. Have you tried a good probiotic? One that needs refrigeration? VSL#3 or Kirkman brand.
So sorry that you have to go through this, but you are on the right track. I would call Mayo and tell them what is going on and i’m sure that they can set up your appointments. You probably will need a Rheumatologist, Primary Doctor that can direct you to the right Doctors. Good luck