Hi there my name is Lya,
I have bren struggling for the last 8 years. Countless of doctors, many procedures, many questions and theories, slapping a label on it and point fingers at a diagnosis, gaslighting by medical community so forth.
Thankfully last few years my medical team has been phenomenal.
I was recently send for an MRI for MS. I figured oh no big deal - I don’t have it. Thought nothing more of it. I have autoimmune diseases such as lupus, 3 major heart surgeries, one lung, rare genetic disease from birth (only 25 people have it) so on and so forth. This morning I actually sat down to do a real look about MS symptoms. My heart winced at the very much on the T symptoms I have been experiencing.
I gradually lost my mobility. Now I am in a 24/7 needing caregiving. I am a one person patient transfer. I have PSWs coming to do care am/pm. My daughters take care of me all day with the exception of my fiancé at night at his place so my daughters can get a break. It’s been a conjoined effort. I am only 42.
It all started with a lid. I couldn’t open. Then it started with jars, water bottles, walking 3 minutes a way to a store, then eventually to the place where I could no longer do anything.
Multiple other symptoms parallel so intricately my daily life. The one specialist said it was neurological. I was left without any answers ahead. That was almost a year ago. My muscle fibers were completely misfiring, not being able to communicate or dead altogether. We had high hopes I would somehow regain some functionality that even with the limited mobility I had it would be restored. Sadly no.
I haven’t had an official diagnosis yet. Tomorrow is the big day.
I have decided no matter what happens. I want ro cease all other procedures, medications and so forth. I am so tired and weary. My team knows i just want to be managed and stable which so far I am given the repetitive symptoms I have either getting better or worse.
I realize I maybe putting the cart before the horse here. It is comforting to know people are experiencing similar challenges, emotions, symptoms and lives as me. I hope if anything I can develop lasting encouraging friendships here. I would love to support you, be a voice of encouragement.
Thank you for reading. Hope to hear from you soon. Don’t hesitate to ask questions or be curious. The mobility symptoms are not the only thing I identify with - I will get into more detail as we go.