So sorry you had those experiences with those docs.
Sadly, it doesn’t surprise me one bit. You’re probably aware they called MS the “fakers disease “ for 30 years before they had tests to “prove” it. My brother complained of symptoms for years and the docs dismissed his symptoms until he ended up not being able to walk up a flight of stairs to his job. He went to a different neurologist who did an MRI and when he compared it to an old MRI done at a different facility he said I’m 99 % sure you have MS and it was clearly present on the MRI done 4 years ago. He did a spinal tap and it confirmed MS. Another brother complained of weakness in his legs and again his complaints were dismissed. A provider at the hospital actually accused him of “faking” not being able to walk when the nurse found him in the restroom (where he had literally crawled to avoid being incontinent when his call light went unanswered). The provider apologized profusely when his tests revealed Clear Cell Renal Cell Carcinoma with Mets to the Spine.
My husband was at Barnes Jewish Hospital in Saint Louis with a newly diagnosed Glioblastoma, was paralyzed on one side and aphasic and I heard a neuro resident in ICU ask him if he was sure he just didn’t want to talk because he was depressed! And they wonder why we don’t always trust their judgment. I’ve seen too much to take what they tell me as gospel. I have wondered if I might have an auto immune disease that has not been diagnosed but with each new symptom I’ve told them about or each test I’ve asked for it only adds to being labeled psychosomatic, anxious, overly concerned, etc.
I feel that being on the prednisone has muddied the waters for me, so to speak, in trying to figure out what on earth is at the root of all of this.
I had white matter lesions show on an MRI of my brain back in 2018 which they told me was most likely from my migraines. They did another brain MRI recently that they are now saying is most likely micro vascular disease because the white lesions have increased. When I looked up the description of the MRI results they are also consistent with MS, so who knows unless I have a spinal tap to rule that out. The good news is I’m not in a wheel chair, I can still breathe, and my pain is tolerable; still, I’d like some answers.