I’m still here. Just getting through each day as best I can. I have my positive moments and the days where things feel like they flow. But really, it is hard. I’m no closer to answers about my left leg or my other symptoms than I was a year ago. So it was back in the MRI machine tonight for brain and cervical, with thoracic and lumbar on Monday.
Myself and one of my PTs suspect I have tethered cord. Except it didn’t show up on my MRIs from February 2021, so that would make it occult and most surgeons either don’t believe in it or don’t want to/can’t operate on it. My PCP agreed on ordering a new series of MRIs and is sending out referalls to my original neurosurgeon and the one occult tethered cord specialist that I’m aware of.
It would be so much easier if my surgeon were to acknowledge my symptoms, history, and any signs on the imaging that something isn’t right. It is an hour and a half drive, whereas the occult TC specialist is on the east coast. As much as I don’t want to need another major surgery with long recovery, I really need answers and help and I hope that these new images point us in a clear direction.
On top of the fatigue, migraines, pressure headaches, pulsatile tinnitus, weakness, brain fog, left leg issues (knee buckling, muscle wasting, and foot drop), bladder issues, and a handful of other things, I have had a cough since mid September 2021. I hadn’t just been sick and I don’t have any airborne allergies.
The pulmonologist I saw a couple months ago had me pause the inhaler for 2 doses and then do some breathing tests. I was told that from those results I don’t have asthma. I was told to schedule a follow up and to stop my inhaler a few weeks before. I just weaned off of it and the lung issues are in full force. I’m not gonna hold my breatb that this doctor is going to figure out why I developed breathing issues out of thin air. (Yes, I said it!) My theory is mold or MCAS/EDS related.
I am hopeful that being off the inhaler will improve my sleep. I haven’t woken up feeling remotely rested after 8-9 hours of “sleep” in a handful of years. So any little improvement is a big deal to me. I do (or have done) all the things except for the completely no screen time before bed. I use blue light filters and don’t do anything that gets my brain wired.