Alternative diagnosis that I want to throw out the... - Headway

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Alternative diagnosis that I want to throw out the window

RainbowBrie
RainbowBrie

I had encephalitis in December 2019. I can safely say I was the sickest I have ever been. There are 3 days I still cannot remember much about. I had confusion, slurred speech, headache, light sensitivity, noise sensitivity and nausea. Oh and I couldn't walk for falling over. I had 2 weeks of IV acyclovir. My brain MRI showed swelling and demyelination. I got sent home with sod all really. I've luckily got a good GP who has put support in place and signed me off work.

I'm left with short term memory loss. Tinnitus that often is deafening. I've lost some sight in my right eye and some peripheral vision. I am exhausted most days needing to sleep during the day. When I do too much I vomit. I started driving again a few weeks ago and am unable to get from a to b in my head. I need to plot the route before I start driving or rely on satnav.

2 weeks ago I had a repeat brain MRI. Which showed similar demyelination. I had a letter through from the consultant I saw when I was discharged from hospital (he only saw me that day, not over my 2 week stay). He says as I remain well and my brain MRI is similar to the first that my brain could just be like this. Oh and that possibly it was all a migraine and not encephalitis!!! I am livid. Confused. Upset. I don't know what to do. I've had to defer my uni study which will cost me if I don't have exceptional circumstances. I can't work.

Just need to vent in a safe space.

9 Replies
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What a horrible tough experience for you. My heart goes out to you.

Hi Brie,

Do you have a follow up appointment to see the Neurosurgeon/Neurologist in the future?

Also, as frustrating as it is to hear it was only a couple of months (at most) since your encephalitis. The brain takes a long time to recover and it needs space and patience to do this efficiently. I tried to rush my recovery and it kept sending me backwards!

I do think that you have exceptional circumstances with regards to Uni. Have you been in touch with them regarding your illness?

I think you deserve some clarification on what the consultant meant when he said it was a migraine rather than encephalitis? You don’t just acquire random demyelination, there has to be some type of inflammatory response to a pathogen, autoimmune response etc. It doesn’t just happen.

I really feel for you and I wish you all the best in your recovery and I hope that you can recommence your study.

Emma

Thank you Emma. I too feel exactly the same way - myelation doesn't just happen. Neither does deep white matter. I'm not happy with the response - that's just possibly your brain. Thankfully I have an incredibly supportive GP who I contacted yesterday and left a message. He got straight back to me today and reassured me that with my symptoms and clinical presentation (he was the one who saw me and sent me straight to hospital) that I categorically did not have a migraine. He is going to refer me to neurology as the consultant hasn't.

You are very welcome Brie!

It was a lazy response at best and sometimes I honestly wish these dismissive consultants could walk a mile in our shoes!

That’s great that you have a really supportive GP and helpful that he saw you initially as he will hopefully write an accurate referral to the Neuro team.

Without sounding patronising, make sure you start writing down any ongoing issues/deficits that you are experiencing (even if you don’t think they relate to your brain injury) as I definitely find the pressure of consultations quite tricky to navigate as I have memory problems & I am typically a poor historian, so doctors can get a little frustrated when I can’t answer their questions.

This forum is a huge help, I would have been lost all those years ago without it & I like to pop in and out to talk to others who are a bit earlier in their journey.

Just want to echo what Broken Doll says. What's happening to you is absolutely awful. How on earth can he say that about the demyleation??

'That's possibly just your brain?'!!

How great that you have a supportive GP who is on your side!! I'd personally get onto PALS if you can- they've been a great help with me, as I've battled with neurologists.

I've been though other medical departments, and hands down, neurologists have been the worst, most incompetent and just bizarre doctors I've ever met.

I am really not shocked by your neurologist's behaviour, sadly.

One neurologist missed some vision issues, that would have helped pick up my BI a lot earlier- luckily I had a great optician who sent me back.

So what has your optician said about the vision loss??

How can he explain the vision issues??

Surely they would have done a ton of testing in hospital when they suspected Encephalitis!?

He didn't think my vision had been affected. Was so dismissive. I spoke to the encephalitis society who advised I see my normal optician. I have pretty shoddy eyesight anyway, worn glasses since I was 6 and have astigmatism in both eyes. The optician was shocked when I told her my story. Not surprising right eye sight had decreased massively and loss of peripheral vision. I've sent the results to the consultant but he's yet to get back to me.

I was so livid with the letter I emailed a reply straight to the consultant with 'a day in the life of me' to let him know exactly what it's like for me.

Felt so belittled if it hadn't been for my GP today I would have spiralled into a very dark place. Having your symptoms dismissed is horrid. Thank you for all your kind comments.

If you can- phone PALS tomorrow. They helped me so much, and it may help your emotional state to have someone else on your side.

You could try and request a second opinion.

So does your optician attribute your visual loss to the encephalitis? Did you send the report to your GP too?

Yep optician says it's most likely the encephalitis that's caused it. I only had my eyes tested 9 months ago. They very rarely change every 2 years I'm tested.

Report would have gone to GP. GP is categorically disagreeing with the consultant and is willing to put it in writing.

That's great that you also have the optician on your side, and that your GP is going to do that.

It was an optician who got the ball rolling with my BI too.

Keep us posted.

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