Acute Disseminated Encephalomyelitis (ADEM) Support Group

Floppy diagnosis, disinterested neuro

#1

Hello
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.

#2

Hey Bloominell,
Welcome to the community. I’m sorry to say, as you’ve obviously found out, when it comes to the brain, a firm diagnosis can be like chasing you own shadow and as for being treated as a bit hysterical, it tends to happen a fair bit, especially for those of us with rare conditions.

Although my condition is not ADEM related I went through the same sort of scenario, being told “There’s nothing wrong, it’s all in your head” that was until they did find something and guess what, it was in my head. I had been telling there was an issue for a long time only to be minimised and have symptoms discredited.

After F.I.N.A.L.L.Y. obtaining a firm diagnosis I obtained a copy of the neurology professor’s report. For every further appointment I have I used this dr’s report as supporting evidence and none of the other reports. I have found presenting the other reports only ‘muddies the waters’ even further and throws the diagnosis into doubt.

Also I have found that I can tell the dr’s exactly what has been occurring, with very little interest, but once they have a scan, tests and reports to show a diagnosis they seem far more receptive. As you’ve had MRI’s, both with and without contrast, you should be able to get those images and reports put onto a CD or a digital file, you maybe able to have your general dr make a referral to a major hospital in London and then forward the scans/reports on to them for further analysis. You may want to investigate which hospital has the best neurology team dealing specifically with ADEM or MS and get your dr to make a referral to that specific hospital.

It can be so soul destroying when your local medical service has limited knowledge and all you’re told is “Well, deal with it” HOW??? I had the ‘joy’ of attending a hospital run pain clinic. For muscular or joint pain they may have been great, but for neurological pain their response was basically “We have no answers, so, manage the best way you can…” as if I hadn’t been doing so already. I was more looking for other ways to manage, but they were a bit short on answers in that regard. Telling me to do what I’d already been doing.

I wish you the best of luck in your search and please do let us know how you get on, others here may be able to make other suggestions of specific specialists that they have received some results through, but I’d certainly suggest looking outside of Scotland to elsewhere in the U.K.

Merl from the Moderator Support Team

#3

Hi there! There’s a support group in Scotland, might give them a try. Here’s the link. Best wishes https://myelitis.org/living-with-myelitis/resources/support-group-network/scotland/