Newly diagnosed, confused and terrified - FND Action

FND Action

Newly diagnosed, confused and terrified

Hello, over the past few weeks I’ve been experiencing strange neurological symptoms -tingling in hands, legs and sometimes face, slight weakness in my left leg when I walk, blurred vision, slurring the odd word and a tight, hoarse voice. My face also keeps flushing bright red and going very hot at least once a day. I was incorrectly diagnosed with MS last friday without any scan, and a following a second opinion and further tests inc brain MRI I was rediagnosed with FND yesterday and sent on my way, with a follow up neurologist review on 30th October which feels like a long way away. I was told that my symptoms are only mild and that good sleep is key, they have given me antidepressants to take every night for 6 weeks and have said that I should start feeling better on my own soon. Having done some research myself it seems as though I could be doing a lot more to help myself, does anyone have any advice please or anything to help me stop completely freaking out and making everything even worse? I’ve booked a GP appointment for next week to see if they can help me in any way. I’m currently off work and panicking about what is going to happen and what to do for the best. Am I going to get worse? Im currently trying for a baby too and don’t know what to do now. Any help or support on any of the above would be appreciated so much. Thanks in advance

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You sound very overwhelmed Beanfam. What I would suggest is that you take out time for quality self care, do something relaxing and allow all that threatens to overwhelm you drop away at least for a little while so that higher thoughts can come in. It can be scary when you feel completely out of control of your own body and don't know what is going on, but honestly, stressing yourself out won't help. Make sure you keep a good network of people who can support you emotionally as well as physically.

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Hi Beanfam, my daughter was diagnosed last December and when we did some research (a) we weren't convinced by the diagnosis and (b) we were terrified as to what the future might hold

We went for a second opinion and that neurologist didn't mention FND at all! When we told her of the first neurologist's diagnosis, she said it could be but she didn't necessarily think so. But what she did tell us is that we shouldn't expect her to develop other and worse symptoms if she did have FND. Instead she said what a patient first presents with is likely to be how it stays, and not necessarily disimproving into other areas.

So try not to stress and panic and maybe as you currently are is how it will stay - that's bad enough I know, but try not to think you're going to develop more symptoms and get worse.

Thankfully my daughter has totally improved and didn't get worse - I wish the same for you and anyone who has or might have this awful affliction 🙏

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