So this has been a long stint. Much like one of the DIC episodes I sit here in a hospital bed to receive steroids. Seems I respond to them so it’s a pattern.
All this started after I incurred a staff infection that worsened. That all seemed to clear up but I noticed an issue once I got home. Hey I was on some heavy antibiotics so nothing to be concerned about…
Twenty days later I was crying like a baby thinking I was about to become a paraplegic as my legs shut down. My right leg a useless limp limb. Even in first instance I never needed physical assistance to walk but right now the are two walkers in my house and I needed them.
A quick push of Prednisone and I walked a little better but my right leg was still dead.
Unable to get sleep because it’s not just my legs that are a problem. Monday morning around 2:30 I felt a huge wave of pain then warmth and realized things just got worse… Ugggh how.
I did some work made some plans and then went to the Emergency Room. Catheter in, physical assessments done and of too a room.
Hurry and wait but a neurologist appears… Exchange of information and history and we start addressing symptoms (steroids are not a treatment). A few days later and a fresh set of MRI’s taken. The steroids didn’t get my leg back but swelling was dramatically reduced and discomfort levels dropped substantially.
Doctors convene and looks like I am going on yet another ambulance run. Plan was send me to main campus at the concentration of the Neurology department.
Well certainly a nicer room. I got in at a rather late hour but received the immediate attention ⚠ of several Neurologists for the initial assessments.
Steroid drop continues. Large grout of doctors next day, lots of questions and response diagnostics. All of the previous uncertainties restated but there is thought.
So for the two lovely conditions I have, I don’t really fit. With CVIDS my produce antibodies so not a clear case, TM again I don’t check all of the boxes.
Today I hear the doctors are getting good documents from my other episodes. Nothing firm but looking like we are looking at the neurosarcoidosis diagnosis again. This refers back to a previously confusing set of events in my second TM occurrence. Again I didn’t hit all of the markers because the biopsy did not show the granuloma expected. Upside the is a treatment, diagnose is with the Affordable Care Act can I afford it?
Hopefully there is more information coming.
Kavanagh, John J. 