I am truly fed up. Been in lmbo for years and been seriously investigated for the last 5 !
I recently found out that Hashimotos hypothyroidism (which I have) can lead to Hashimoto encephalopathy myelopathy (CNS lesions. I asked if I could have the test for this which is a blood test (expensive probably). But was told I was “clutching at straws as this is very rare.” My reply was “well whatever I have is rare as you cant seem to be able to diagnose me”
There is a service at the John Hopkins Hospital in America were you can send all your medical reports and MRI scans to them for a fee of $500. They are experts at “rare neuro conditions” and some like Hashimoto encephalopathy myelopathy are treatable. Also if they find I do have MS then finally I will be allowed some of these DMD treatments that are available. Basically sitting on the fence is no good.