March is autoimmune awareness month. In honor of it I’m posting infographics on my facebook and twitter sharing various autoimmune disease facts throughout the month. But a facebook poll from a fellow Sjogren’s patient got me thinking – and it lead me to a realization of how many types of awareness need increasing! Of course… Read More
I wrote about my experiences with Brain Fog earlier on this blog. It’s still happening, and probably increasingly so (both in frequency and severity). The following excerpt is a pretty good summation of how I’ve felt for the past few years. It’s from Susan McDermott, M.D.’s talk “Brain Fog and Other Central Nervous System Symptoms:… Read More
I had a neuropsych evaluation last week. The specialist in Philly (“Dr. D”) wanted me to have a cognitive evaluation completed before I began the Imuran (immunosuppresive) as a baseline to see if there are any improvements after I’ve been on the meds for a while. I received the report from that evaluation on Monday. … Read More
So when the doctor completely reversed his plan of attack after 8 months with zero explanation (which lead to me “firing” him and traveling half way across the country to see a Sjogren’s specialist), he did give a slight explanation… He said that treating my Sjogren’s with immunosuppresive meds would be “like killing an ant… Read More
I’ve been in several conversations lately about the need for patients to get their medical records and data. I wrote a post recently about the need to read our medical records as I found 16 errors in the write-ups from 6 visits with a doctor. Julie Ryan asked me to write a guest post for… Read More
Thank you so very much to everyone that has emailed, tweeted, messaged, prayed for and thought about me as I went to Philly to see a Sjogren’s specialist after my non-satisfying experiences with local doctors. The experience was definitely worth the time and expense of the trip! He was a wonderful doctor – thorough, asked… Read More
In prep for my visit to Philly next week to see a specialist, I have been organizing and summarizing my medical records. I went through the process to obtain them all this summer (Rheumatologists Dr. A, Dr. B and Dr. C, Ophthalmologist Dr. O and Neurologist that I just realized I never “named” so let’s… Read More
You may have read my reaction to my latest rheumatology appointment. When I was told the treatment that my doctor had been talking about for 7 months had all of the sudden become “unwarranted” in his mind. I’m still not through my “I have to get through these three weeks before I can process what’s… Read More
I’ve been putting off posting this – mostly because I’m putting off dealing with it all until I can come up for air and do so properly. See, it’s what I call “crazy season” – it’s the time of year that’s filled with graduations, end of school events, dance recitals (and final competitions for the… Read More
It’s frustrating when things are “normal” yet you know they’re not “normal”! My EMG/NCS was normal. My muscle enzymes are normal. All of my MRI’s (head, spine, thigh) have all been normal. Even my sleep study was normal. Yet I have fine motor control/dexterity/muscle issues. All of these tests (with the exception of the sleep… Read More