Perseverance? (Undiagnosed)
I'm a brand new member here, and even if I end up not having MS I feel the most seen by Ms patients because of my symptoms so hopefully you all can give me wisdom.
My whole life I have known there was something physically off about me. I couldn't do activities other kids could, random pains no one took seriously, digestive issues, balance problems, and dizziness. It would come and go but after puberty, it was much more common. Once again, was never taken seriously. Through adulthood I slowly have been progressing worse but had learned to manage most of it.
At the end of March, beginning of April 2024 I very rapidly declined. I suddenly developed major symptoms such as AFib, tachycardia, bradycardia, rapid weight loss, muscle weakness, extreme fatigue, syncope, intolerance to both heat and cold, extreme food aversion, and the list goes on. Every bodily function is inflamed and not functioning properly..
I have had extensive testing, hundreds of blood draws, hormone testing, thyroid tests, sleep tests, CT scans, MRIs..
Every test comes back "perfect". Outside of the obvious dysfunction going on physically.
My doctor's are officially starting to look scared of me when I walk in the building lol. They have told me that they are completely dumbfounded and hope that by sending me off to a teaching college, I may receive answers one day.
My first appointment with the college hospital will be June 2025.
So in the meantime, how in the world do you guys not become cynical, and angry? How do you find the strength to keep pushing through your days? I feel like I'm barely holding on to my life and I have very very limited resources for assistance.. any advice would be incredible. Or even just to feel seen by someone else who had years of testing before a diagnosis? Are there secrets to talking to your doctors? Are there secrets to managing symptoms?
I completely get you, I’m still on the list for neuro and over the years the drs dreaded me coming in with something new and speaking to people saying “what is it now” the years and years of bloods showing normal scans normal “we just don’t know” until my body decided to show that I wasn’t just coming up with the symptoms outve thin air and in the end I found a lovely doctor who made it his mission to get to the bottom of it
I seeing more and more of this. Symptoms before ‘evidence’ like years before! You could have lupus though as sounds like a lot of organs involved. I was 23 when my MRI showed lesions but like you I remember around 11ish things were ‘off’. My advice as crazy as it sounds it’s ignore it all. Tell yourself you’re fine. The body has a way of getting the help when it’s ready. I wasn’t diagnosed until I was 33 because those lesions were missed originally it’s only when they looked back they realised they had missed them so for 10 years the healthcare system made me believe ‘I’ was the crazy one and I started to believe the illness was in my head. Then at 32 I had stroke like symptoms that can’t really be ignored as I wouldn’t walk or talk by then the amount of the missed lesions they had found had tripled!!