Newly diagnosed, confused and terrified, please help

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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Hello x it sounds like you have had an awful ordeal but I am really glad you found this forum so quickly and there is so much support here. I wish I had found it much sooner.

I am so sorry you are going through this - I’m still quite early in my diagnosis of FND so I’m still on a very steep learning curve myself ... but you sound like you’ve got super strength and willpower to get the right treatment and support from the start and that will do wonders 😌 and well done for doing your own research so far

I’m glad you are having a follow up neurology appointment that sounds like a big positive - have they offered you any neuro-physio? I only had slight walking issues at the time of my diagnosis and I didn’t go as I felt a bit of a fraud because of my walking symptoms being intermittent, my neurologist didn’t explain didn’t want to see me again and I didn’t understand the diagnosis. If I could do anything differently I would have gone then it would have made a huge difference to me.

You could ask your GP to arrange this through your neurologist while you await the appointment? I have found the neuro physios to be the most helpful part of my recovery so far and know their stuff and are so helpful just to talk through the diagnosis with.

Have you found the neurosymptoms website?

neurosymptoms.org/

Thinking of you and sending lots of support xx

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Thank you so much for the lovely response, I hope you are coping ok with it all. They didn’t offer me anything outside of the meds, they seemed super confident that with a few weeks of antidepressants and sleep the whole thing will completely clear up, but having looked online this really doesn’t seem likely to me. I’ll definitely take your advice and speak to the GP about neuro physio and get started on that in the meantime, my symptoms really aren’t that bad in comparison to other cases I’ve read about online, but the sheer anxiety I’m experiencing is making me worry that I’m going to make myself much, much worse and I’m desperate to start having children soon as I’m 38. Thanks for your kind words, sending you lots of support too xx

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Well lets review and see the situation. You have a long wait period, which already sucks to sit and wait which allows stress and an idle mind. You're off work which really doesn't help with time productivity. Then you were given antidepressants, along with trying to get pregnant......

Stress is bad for neuro symptoms and you don't have anything to do long-term. So from what I see you are sitting on or in a pot crap and you need to help in guidance.... Your stress is a biproduct of the lack of near by support. So by having some support in any way would shine a light in front of you.... Yes more help for yourself is key.... So from my experience the only cure to boredom and stress is have something to do.... I journal, I work around the house such as clean, and I also go places with my wife to be as normal as possible.

Taking up a hobby you'd be interested in would generate interest, curiosity, ambition maybe and other fruitful things.....Anti depressants may help but thats only for mental influence not take up an entire day of nothing to do. Trying to be pregnant could also be stressful.....So from what I see you're literally surrounded by things that harbor self isolation and destruction..... Best thing for you to do is find a new purpose.......For me Im not working and need to readjust so I am going to an animal shelter to volunteer. That way im in a NEW environment with new things and with new people. Ill be learning how to be different in the work place and how people see me. This I know will bring a bi product of joy, purpose, understanding, and other benefits because I need to spend TIME filling my day up with things. Every day you wake u learn your surroundings and see things as rountine.....That brings on things like boredom...... Having a sense of purpose and not live in a BUBBLE will challenge and you wont be in downward spiral.

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Thank you, you’re completely right I need to focus my attention somewhere other than on how I’m feeling, and to be as normal as possible. It sounds like you’re coping incredibly well and doing all the right things, thank you for the advice it’s much appreciated and reassuring that other people have been/are going through this

[artmom]

I’m sorry. For you and what you’ve been told. Sure, good sleep helps everyone. In any situation. It ain’t gonna cure a neurological disorder though. What’s the antidepressant and how much? Is it low-dose (amitriptyline) for neuropathic pain? Or not, in which case have you been dx with depression or do you think you are depressed? Telling you you will start to feel better on your own is bullshit. And of course you feel anxious with all this weird stuff going on with your body. And yes, getting out and taking up bird watching might occupy you and distract you, but it won’t make this go away. We don’t live in the 1800’s and drs need to stop treating people like they did then. Or worse as we should know better nowadays. I’m sorry if this isn’t positive talk. But I’m sick of hearing how people being dx with fnd are being treated. This sucks and I really hope you feel better soon.

[tigeranne14]

Hi Beanfam, welcome to health unlocjed. My main site is Headway which id great place. don'the kniw if thus will help. I will tell you my journey and you can see what you think. I was diagnosed with FND as a result of my Brain Injury. Last year I decided to look at each symptom and tackle them as individual conditions. I discovered that low magnesium can cause the numbing and tingling I now take Magnesium Chelate 750 I think. I am not at home just now. I no longer suffer from this. I had lots of blood tests done to check all my hormone and essential minerals that I could get. I now see a naturopath who prescribes various supplements because I didn't want to take any chemicals only supplements made from organic sources. Another member of the Headway group had data that trauma can cause many minerals to become depleted. I do need to take lots of rest and pace myself still, but I feel I am progressing at making new pathways. I don't know if you have suffered a trauma, so some or all of this may not be relevant. If you want me to try to find that other post I could try.