I’ve been ill for over five years now, and I’ve had no improvement in any of my symptoms with some chronic worsening. I have left upper quadrant pain, numbness, tingling, which affects me from my upper left lip, left jaw and cheek, left side of my neck and collarbone over onto my back around upper shoulder joint and down my arm to my fingertips; severe fatigue, both cognitive and muscular with regular, almost daily ‘crashes’ where I’m so heavy and weak I just have to lie down; neuropathy in my feet causing freezing cold pain sensations, and which spread up both my legs to my abdomen following a UTI last year.
MRI with contrast showed several demyelinating lesions on brain, one on spine. Saw a private neuro because first NHS neuro was awful. Private neuro diagnosed probable progressive MS, advised to request second NHS opinion. Second NHS neuro disagreed, and said ‘something like an adult ADEM thing’. I was then three years post-first attack of whatever it is. And that’s all I’ve got. Repeat MRI last year (brain only, no contrast) showed just the old lesions. My neuro isn’t interested. He’s nice (though he’s treated me as a bit hysterical) but says nobody knows anything about it, and that if I was going to recover, it would be ‘a considerable length of time’. His advice: have the flu jab and try not to catch anything.
So, I’m desperate for some help, but don’t feel I belong anywhere, though I do get support through my local MS centre. I’m currently six weeks into the most godawful flare, pain through the roof, fatigue acute. Had to go to A&E initially to get stronger pain relief (I take tramadol, duloxetine and amatriptyline, the second two to try to control the lower body neuropathy). Any advice? How do I get a firmer diagnosis of ADEM, is it possible after all these years? Also does anyone know of a neuro specialising in ADEM or rare neuroimmune illnesses that I might ask to see? I live in Glasgow, Scotland.