About Me

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I was recently diagnosed with Distal RTA & Sjogren's Syndrome, which has been a spiritual wake up call for me. I decided to create a blog to empower myself, educate my family & friends and create support for others. I live in Central Florida with my partner, my 10-year old son, an epileptic pug and a rescued cat. I am mecurial, sensitve, passionate and intense.

Thursday, March 1, 2012

Misdiagnosed for 30 years

While in the hospital after recieving my diagnosis of DSjogren's Syndrome, and being told that I had it for a long time, my mind immediately went to 2 times in my life: when as a child I had mononucleosis and hepatitis A that was reactivated (tho I was told that wouldn't happen) when I was 22 and when I almost died from spetic shock in 2003 with no apparent cause ever found. As anyone with SS knows, the diagnosis and information thrown at you is so overwhelming, mostly because of the fact that its typical to go un or misdiagnosed for an average of 7 years. Your mind is reeling as you think if all the medical crap you have tolerated over the years and how odd they all were. Not to mention the diagnosis is like a slap in the face of reality and you usually go through a period of deep reflection on your life. Most of us come out of this period willing to fight and that means making tremendous changes in our lives.

So now, 3 months later, I'm starting to become more curious about how this happened to me. Some say it isn't relative so why bother, just focus on today & tomorrow. But one of the things I've learned in these last 3 months is that I am a fighter on all fronts, including the big fight of raising funds for more research & raising awareness. Perhaps if my doctors or my parents had known more about autoimmunce diseases and Sjogren's I wouldn't have had to wait almost 30 years to find out how much damamge had been done to my body on the inside.

Here is what I found on Wikipedia today:
Mononucleosis is an infectious, widespread viral disease caused by the Epstein–Barr virus (EBV), one type of herpes virus, to which more than 90% of adults have been exposed.[2] Most people are exposed to the virus as children, when the disease produces no noticeable or only flu-like symptoms.

Once the acute symptoms of an initial infection disappear, they often do not return. But once infected, the patient carries the virus for the rest of his or her life. The virus typically lives dormantly in B lymphocytes. Independent infections of mononucleosis may be contracted multiple times, regardless of whether the patient is already carrying the virus dormantly.

Periodically, the virus can reactivate, during which time the patient is again infectious, but usually without any symptoms of illness.[3] Usually, a patient has few, if any, further symptoms or problems from the latent B lymphocyte infection. However, in susceptible hosts under the appropriate environmental stressors, the virus can reactivate and cause vague physical symptoms (or may be subclinical), and during this phase the virus can spread to others. Similar reactivation or chronic subclinical viral activity in susceptible hosts may trigger multiple host autoimmune diseases, such as systemic lupus erythematosus, rheumatoid arthritis, Sjogren's syndrome, antiphospholipid antibody syndrome, and multiple sclerosis


  1. It's sad to imagine all the wasted treatments and effort that went with the wrong diagnosis. Had they properly diagnosed you in the first place, those past attack may even not have occurred. But it's hard to point fingers as to who is at fault, since most medical discoveries and breakthroughs are quite recent. At least now, you know how to deal with it, and what the proper treatment and medication you can take for it. Take care!

    Sabrina Craig @ Medical Attorney

  2. There are many viruses and disease . Due to different disease man can suffered from the body and joints pain to cure the different disease a man should take Physiotherapy North Ryde from the doctor according to the prescription.