I sit here nearly 10 full years after the major symptoms I have suffered with started.
Basically I was Diagnosed with Sjogren's syndrom in 2000 after developing neurological symptoms, brain fog, unsteady gait (at times), decreased tear production, hair loss, migraines, GI Bleeds, etc. (can't remember if I listed the current with the old at that time)
I was diagnosed based on symptoms as my labs were normal.
Had one bout of Virtigo half way into the 6 years of treatment.
Started treatment and stayed on it for 6 years. Was growing afraid to continue meds and went to an allergist/immunologist and he suggest it was Black Mold exposure (something I had) and suggest I do things normally done for someone with bad allergies.
Flash forward 3 years and I have had 3 additional "vertigo" issues lasting 3 - 6 weeks. Other symptoms have returned slowly and an additional GI bleed and diagnosis of IBS, Asthma and fast heart rate.
3 months ago, started having dumping of fat in fecal matter and 2 months ago red tongue developed. I noticed I was feeling poorly and began my quest again to figure this out.
I went back to the eye doc who now says I no longer produce tears. So, I assume it is Sjs again. Since I am serum negative, I decide to have a lip biopsy (one way to make a positive diagnosis) mine came back negative for Sjs but NOT normal. Ent could not say why my tongue was sore and red nor why my vocal cords are paralyzed at the bottom and my voice is weak..he suggested returning to the rheumy.
I decided to do more research and this time, to included my red sore tongue (not all red, mostly the tip)..like I have been licking sand paper. I found Pernicious Anemia (like it was written for me).
I went back to my regular doc, she went through my chart, saw that my B12 was a bit low when I would come in and agreed to test and start treatment for Pernicious Anemia.
One week later, symptoms are leaving, sore tongue is gone and some neuro that I have had for a while is actually leaving. However, all labs are normal. BUT..I did more research last night and found that if you have an autoantibody for AGPC's it might make the test be faulty and you still have B12 deficiency (if I read correclty). So...I still believe it is PA and have an appointment in a week to see a rheumy.
They might have been headed in the right direction in the past, just not the right dx.
What do you think?