Good morning everyone,
Last I wrote on here I was experiencing the same concerns that I continue to work through. I have been back at Oregon Health and Science in the Rheumatology Department and the Parkinson/Involuntary Movement department as well as now scheduled for Fibro clinic. The fatigue and overall frustration is piling up on me again. They did an MRI from a closer hospital, the specialists at OHSU read the report and said there was two "white spots" on the frontal part of my brain, lower temporal lobe. All the rest of my brain and blood flow/veins all the stuff they consider looks healthy and strong. Therefore they have dismissed this and said unless my symptoms change or get worse there is nothing of concern here.
They have completely ruled out Lupus, they took if completely off my medical chart saying it was a wrong diagnosis. My blood test for APS is stable thanks to Warfarin. All other blood tests look amazing as well. Praise God for this, yet there are clearly lingering concerns that I can not shake. Literally "shake" is the word.
I have abrupt involuntary movements that send often intense shock waves like a hot iron poked through and then my body, limbs, neck, back, feet, hands, arms jerk and flay out without any kind of control or warning. The pain overwhelms me sometimes, it started attacking my neck area the last month. My neck and shoulder collide when it happens and I have no way of stopping it. I was at the theater with my mother in law watching a play and my legs acted up and I had to leave due to the kicking out motion and pain into the isle seat. The rheumatologist said that I am clearly having a neurological barrier, he said my "nervous system is sending out amplified and wrong messages to the brain". He said they have cleared out any major diseases that would be an alarm for this type of barrier yet they know it is happening and real so they put me at the Fibromyalgia clinic now and the involuntary movement clinic at the OHSU. They have spoken of Chorrea but I do not see how the chorea is explained to be this painful? They said they can not due much but would recommend pain medication due to the chronic wide spread pain. I do not take pain meds and do not plan on starting either. The other symptoms effect my cognition also. The fatigue and fog, speech delays and memory/cognition barriers are weighing on me quite a bit. I feel unable to function correctly out in public most often. I second guess myself constantly now. Its been a heavy road yet I am hopeful and completely understand there are a multitude of other wayyyyyyyyy wayyyyy more horrid things that are out there in the world. I am thrilled to have a loving husband and medical care and to have a day to live out to its fullest no matter if its a day I need to stay more still...at least I have a place to stay still in . My point is I am far from complaining I am simply reaching out hoping maybe someone on here may have this also and may have a few hints of success or ideas to help.
Thanks for the support out there...