Lupus/what could this be?
It started a couple of years ago. I went from low/normal bp to stage 2 hypertension. Had bad EKG that showed extreme fluttering of atrium. The doctors put me on metopolol and my bp went down to 84/43 within a couple of months. Extreme tiredness, mouth ulcers and rashes including an access started to break out. Tested positive 1:320 on ANA. Positive for sjogrens or other connective tissue disease and lymphocytic microscopic colitis. Tested negative for SSA and SSB which says to me that it's not sjogrens. Doctor's say it's only fibromyalgia but medication has helped nothing. My entire back went out this past winter. All of a sudden I have multiple buldging discs, disc on disc, an annular tear, scoliosis throughout my spine even in my neck, and osteoarthritis throughout my spine. As far as I know fibromyalgia doesn't cause literal deformities in your spine. Please help me figure out what is going on. I get chest pains all the time and my back kills me. They said in order to fix my back I'd have to have every disc replaced which I already know they're not about to do that.
Thanks for writing in.
I am not a doctor, just another lupus patient.
I've lived with lupus for 20 years and have experience being treated with mainstream medications, alternative medicine, and diet modification. That's my background. I'm not a diagnostician. However I have gone from near-death and being on 9 medications plus chemo and transfusions to very healthy. I even take tap dance lessons now, in my 40s. Recovery is absolutely possible, but diagnosis- correct diagnosis- must come first.
You need someone who is really good at getting to the bottom of what's going on with you. Yes there are some signs of autoimmune activity, but this does not sound like any lupus I've ever heard of. You may need 2nd or 3rd opinions, and you may also need to look outside mainstream medicine. There's now "functional medicine" where they take all kinds of tests (these are MDs who instead of just covering symptoms with drugs try to actually address the root of the problem).
Dr Mark Hyman is at the forefront of this kind of medicine. If you aren't near enough to become his patient, perhaps he can recommend someone in your area who practices the same kind of medicine.
You might also ask yourself if anything unusual has happened to you in the last year or so. Traumas, stresses, pollutions, exposures to chemicals or radiation, big life changes. This might help to identify what triggered the problem, and get you closer to the right diagnosis. Diagnosis is so important! How can you know how to proceed if you don't know what you're dealing with? So, that is my wish and hope for you- that you are correctly diagnosed soon, so that healing may begin.
All my best-
The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer
- Carla's book "How Can You NOT Laugh at a Time Like This?"