I am still in the process of being diagnosed, it's been a long and complicated road towards here. It's been clear that I've been dealing with autoimmune issues for the past two years and I have now been referred independently by every single one of my specialists PCP, GI, ENT, Neuro, and Gyn. Hilariously, I was unable to get to Rheumatology until yesterday because I've been too busy putting out other health fires.
Two years ago in the Spring due to a freakish reaction to hormonal drugs I was on for Endometriosis I developed severe seasonal allergies. I felt like I had a severe cold or mild flu, it took me weeks to realize what it was and go to the doctor. I was put on oral and nasal steroids, anti-histamines, and prescription eye drops.
By the end of April I had developed Meniere's Disease, a disorder that involves inflammation of the inner ear leading to vertigo, tinnitus, ear fullness, temporary hearing loss, and eventually permanent hearing loss and deafness. My Meniere's though is atypical in the send that it does not respond to typical interventions like lowering salt intake, and diuretics. Mine also doesn't come and go. Mine flares and just continues to escalate until I get intratympanic steroid (dexamethasone) injections. Then I go into full remission. Other than that I have the full syndrome, and I've already lost 30% of my hearing in the Meniere's ear.
My neuro ENT felt my Meniere's was autoimmune, and that it was highly likely that I had another systemic autoimmune disease so I was referred to Rheumatology.
At the same time as the Meniere's I developed intractable migraines with persistent aura. My auras are neurological they tend to involve aphasia, ataxia, altered mental status, confusion, mood changes, psychosis, and at times loss of consciousness. I developed what is known as status migraine where the headache doesn't "break". The only thing that works is very very long courses of Prednisone. 5 weeks starting at 60mg. After awhile my neurologist at Hopkins was able to switch me to Dexamethasone 18mg for three days and then a taper. So once again there was a concern about an autoimmune condition and I was recommended to follow up with Rheumatology.
Along with this I developed Tachycardia my resting heart rate is 100-120, low grade fevers 99.5 through the low 100s. I eventually fired my first neurologist because the fevers, heart rate, and altered mental state they kept sending me to the ER for Meningitis and Stroke. I also developed redness on the bridge and side of my nose, and heat rash on my chest with any direct sun exposure. The face is fairly mild, no itchy, just scaly and pinky red. I had to start wearing darker foundation to mask it. I also developed dry eyes and throat. I also developed Raynaud's in my hands and feet, along with periodic lace like red patterns on my hands, feet and calves. It's worse in the winter. I have to wear gloves and thick socks even when inside.
I mentioned before that I have Endometriosis. I am really lucky and have surgeons who specialize in the disease and I have had no endo to minimal endometriosis for the past 3 years due to this, I also had a subtotal hysterectomy for a related disorder Adenomyosis. This fall shortly after being able to come of steroids for migraines and the Meniere's Disease my colon started shutting down, I developed bad inflammation in my pelvis. By the first week of January I was being recommended for surgery, and by February my colon stopped moving at all and I developed bad reflux. So I had the surgery on 3/16.
At my post op on Monday I was told that my pelvis had frozen with scar tissue, primarily my colon, and I had only one small potential area of Endometriosis. My surgeon was certain I had another source of inflammation, likely autoimmune. I was recommended to follow up with GI and Rheumatology ASAP.
My GI has serious concern about my colon function though my symptoms do not match with Crohn's. She also urged me to follow up with Rheumatology, as well as my primary care doctor.
Rheumatology's first thought was Lupus, and they took a ton of blood to do various specialized tests that will take 3 weeks to come back. However, my routine blood work has been normal basic CBC etc.
My feelings are so mixed. On one hand I am desperate to know what is going on so I can get appropriate treatment. On the other this is a scary diagnosis. All the little pieces come together too well, enough that I question myself and it's maddening.
To add to this 1.5 weeks post op I developed severe abdominal swelling, pain, my colon shut down (and no narcotics), severe pain after eating, severe reflux. My ear also had started getting fussy, so I gave in yesterday (3 wks post op) and took my dexamethasone and now everything is once again back to normal.