As promised an over due update on my appointment with the rheumatologist today. Prior to our appointment as we were a bit early, we went to one of our favorite places. I still wasn't feeling well whatsoever. I had a small bowl of strawberries while Brett enjoyed an early lunch before walking back to the doctor's office. Sitting in a very full waiting room, Brett standing across the room in the only spot available, I suddenly realized that I was feeling much worse. I am still needing a little help getting up and down in some positions - especially with my core spasming. I carefully made it over to Brett and barely said the words before he made sure the staff was aware of my situation. In less than a minute I was in an exam room and Brett watched by an interested and confused nurse, Brett got the Ativan injected and proceeded to make sure that despite my rapid strong movements he ensures that I stayed on the hard exam table for another 20 minutes.
Fortunately, Dr. V was able to see a seizure for the first time. Unfortunately for me it was full blown no holds back hands and fingers cramped in odd positions, throat spasming and grunting/gagging, twisted leg/ ankle - the whole bit. Breathing during this strong of a seizure is usually a challenge, as always Brett kept reminding me patiently as possible to breathe. Take deep breathes. Much, much easier said than done.
Once everything was mostly relaxed Dr. V explained all the autoimmune blood work he had done was negative. Few that looked strong Lupus (constantly teased by this - positive ana, speckled pattern but low titer 1:40), other markers negative, I have been displaying a mottled lace like vascular pattern above my knees and wrists. This combined with the unusual neurological activity and a few other indicators looked very much like a rare condition Sneddons Syndrome. Not something I want or wanted to be diagnoses with as veins degenerate, patients often struggle with blood clots and a very high risk of TIA strokes as well as full blown strokes and heart attacks. I was terrified but reading it - it sounded like they were writing about me.
Bechet's syndrome is a form of vasculitis. Like the above and other diseases in the vasculitis family - it attacks the bodies own vascular system. Just over a month ago a beautiful family we have known many years lost their 28 year old daughter to this disease quire suddenly. When the doctor told me those results were negative I went numb. Thankful beyond words while grieving for a friends loss of her daughter from the same thing.
The last one I know of (the list was too long to hit them all) was Systematic Lupus. Again nope....again I don't understand how I have the positive ana, speckled pattern and ....... ??? I need to understand the process.
The bad news was liver enzymes came back high so he retested that along with doing a palpitation of my abdomen. Results should be back fairly quickly and then we will know more. One possibility is that for some reason the meds taken for the surgery were too much to process (I still question why my body would be so slow. The second possibility is some sort of infection.
By this point in the conversation the ativan had taken over my brain and I was done making any sense. I do know he should have the test back soon and we'll discuss more then. I mentioned the 18+ hours I am sleeping each day, he calmly said don't worry about it, we'll talk soon.
I did call the neuro since the seizures have picked up in intensity and frequency even in the past 10 days or so. He pointed out that my body is off kilter my seizures are reactive to that. Wise words - anything in my body isn't as it should be and my seizure threshold goes down further and further. Surgery was only a month ago ( I will catch you up on that soon), I am still struggling with pain management as well as my body is working hard to heal.
For now I am in a lot of pain beyond exhausted and hoping that writing would distract my body and mind into sleep. Onto something new....
I hope given my sleepiness and pain medication. Please check out my new blog - its going to be all over the map covering things that I have found keep my life wonderful! Some days will b reflective, thanks, family, friends, inspirations, clean eating, fitness, car shows, vintage finds,
