Hello again : Hi. Ive had to shut down... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Hello again

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Hi. Ive had to shut down and rejoin the group. HU was,playing up. I have such great comments and ideas,already from Lady4 and others, so thank you. Below was, my original post

Hello Everyone,I have just joined this group and look forward to reading your journey's with coping with FND. The symptoms are so varied. Mine are mild but have been getting progressively worse. The support and suggestions you give each other in amazing.

I was seen by a neurologist in August 2021 as I noticed that my right leg had started to shake uncontrollably. All the tests were done, MRI's etc but nothing showed.

They then referred to another neurologist who did more scans and also EEG's. Again tests came back clear. They then referred me to another neurologist, who after telling him I had covid at the beginning of the pandemic and labelled long covid, he was adamant this was the reason and said I needed a PET scan to check for lesions on the left side of my brain. I saw a documentary about NHS nurses who has contracted covid and one had severe tremors and I know studies/research ahd shown this to happen to some long covid people. Before the PET scan could be done, he retired without my knowledge. After complaining to the Neurology department, they promised to arrange an appointment asap as my tremors had become more pronounced (both feet, legs, hands, arms) I attended the hospital and had a DAT scan which showed there were no issues. I decided to do my own research and looked up FND and my symptoms were very similar. Eventually I saw a Professor of neurology from Kings College Hospital. I waited for him to do all the tests and if he hadnt mentioned FND I would have asked if it was possibility. A the end of the examination he told me he thought I had signs of FND and has now referred me to Mark Edwards at Kings. I am hoping the wait will not be too long (fingers crossed).

Anyway, this is my journey so far and just wanted to say hi.

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Lady4 profile image
Lady4

Hi Trish, can you see the feed from your other account Rainbow-Lover.

in reply toLady4

Rainbow lover isnt my account my darling, it never has been

Lady4 profile image
Lady4 in reply to

Sorry I wasn't sure and remembered your name and replying (prob both the same day).

Lady4 profile image
Lady4

Ps. What did the other member suggest for foot tremors that they found successful, I was just looking back for the information to pass to a member of another group.

in reply toLady4

That's OK no worries. Yes, I purchased the weighted lap pad and it did help when the tremors started. It didn't stop them completely as quite strong tremors but it definitely helped to calm them down. I think it was @Shimmyaway that recommended it to me. I remember another person said they used it at night on their feet and they wouldn't be without it.

Lady4 profile image
Lady4 in reply to

Good to hear lap pad helped, I think the trick is to try and grab it before, if you can, to help calm (regulate) your nervous system.

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