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Demyelinating disease/isolated brain stem legion

Hey Just wanted somewhere to write down what I’ve been through the past couple of weeks and for any advice or reassurance. 2 weeks ago I woke in the middle of the night having what I can only describe as a panic attack followed by the worst headache I have ever experienced. I managed to calm myself down quite quickly and after taking paracetamol the headache went. However it became very clear quite quickly when I woke up on Wednesday morning that I felt very unwell. I had pins and needles down the left hand side of my body and felt what i can only describe as being on a differrnt planet. Everything was weird and sounded strange and I had lost all sense of balance and coordination. My Vision was affected but this didn’t start until I’d been in hospital for 4 days, double vision being the worst. I went to the doctors who were amazing and sent me to the hospital where to cut a long story short I spent 9 days in hopsital and had 2 mri scans beacuse they werent sure if the fist one showed something or not. They did another with the contrast dye this confirmed it was a little larger on the 2nd scan. I was discharged from hospital with a diagnoses of Isolated Inflammatory brain stem legion/ demyelinating disease and a course of steroids to take for 10 days. We’re now on day 7 of steroids and I still feel so rubbish and things are not improving. I have scared myself by reading all sorts on the internet… I know I shouldn’t but it’s easier said then done. Am i going to get better from this? Im only 35 and i feel like ive just been left to get on with it with no real explanation as to what this actually is or what I can expect. I just want to feel normal again. My Vision hasn’t improved and this scares me the most. I have been told that I will have a follow up appointment with the neurologist but I have no idea how long I will have to wait for this. My family and friends have been great but it’s hard for them to understand because physically I look fine but I have all this weird stuff going on inside. Any advice or just kind words would be very much appreciated Thank you. Rebecca. X

Hello Rebecca

It sounds like what is commonly called a Clinically Isolated Syndrome (CIS). Have a look at https://www.mstrust.org.uk/a-z/clinically-isolated-syndrome-cis

The article does say that a CIS may predispose a person to developing MS, but need not. And when the symptoms are related to the eyes or sensory symptoms, the person is less likely to develop MS.

It is horrible and frightening to be in hospital following such an extreme happening.

And it’s also bloody awful to be on a 10 day high dose steroid course. They do make you feel like crap and sleeping in particular is difficult as well as your mood.

Try to avoid Dr Google, s/he is a terrible doctor. And you’ll end up suffering galloping plague or smallpox if you continue self diagnosis with the help of the Internet.

Ask the neurologist when you have your follow up appointment what s/he thinks the chances are of a reoccurrence or developing MS. Meanwhile, start to keep a diary of what’s happened so far, keep notes of the symptoms, treatment, side effects and when the symptoms subside. They do tend to.

And feel free to post on here when you feel the urge. We do understand - we’ve many of us been in a similar situation. And of course, mostly we are diagnosed with MS, so can help out with fear and worry about the possible diagnosis.

Hopefully you’ll get better soon. And this will be your one and only experience.

Sue